Infantile seizures and epilepsy

[Lallas' Mum]

I have two sons, one is just over two yrs old and the other is about 6 1/2 mths old.
My eldest suffered from infantile seizures from the time he was 4 1/2 mths old. He went on anti-convulsant medication until after his first birthday when he was weaned off medication. He has been seizure free since July 04 and has been of the meds now for almost one year.
My youngest son started having absent seizures when he was four 1/2 months old. They were nothing more then staring spells from which you could not arouse him from. He was unaware of his surroundings at the time, just staring vacantly and then "bang" back to normal play. We monitored him for nearly two months in which time the seizures were nothing more than staring episodes. Until last week. He had three tonic clonic seizures (shaking, jerking turning blue in the face type). The last seizure he had he lost conciousness for six minutes afterward. Very scary I can tell you. He has started on anti-convulsant medication the same as my other son.
All the test results on both sons were "normal" and the underlying cause is unknown.

I am sure that seizures are more common than most of us think. There are other Mums on BubHub who have posted about seizures (most have underlying causes). But how many other parents didn't respond to those threads and say that there children had seizures too. As mentioned BOTH my children had seizures during their first year of life. But what is even more freaky in that my neighbours son (no relation to me) is two months younger than my second son also has seizures. They both had seizures within a half hour of each other on Friday just past. They are no known underlying causes for him either.

Surely this has to be a more common event than I first thought. Any input???

[pegasus]

Hi,

My DS had his first seizure (grand mal) at about 9months. Since then he has had about 10 with the last being about 10weeks ago *touch wood*. We originally took him to the doctor everytime and each time were told this is normal - he'll grow out of them. The dr's all said that they must be febrile (with a temp) as they didn't have any other explanation. if by the time we got him to the Dr there was no temp (and I checked and hadn't found one) we were told there must have been one, it had just fallen by the time I got the thermometer (false - I was on top of it with a you beaut aural(ear) thermometer everytime). I wasn't convinced that it was normal so I got a paediatrician referral who told us that DS has a low seizure threshold may be set off with bang to head (apparently adults can have this and only find out when teens and playing footy etc), infection etc. Doc gave me some reading which said 4% of all bubs have 1 seizure, half of those will have a second one, a third of those will have a third one and more than three isn't common (from medical neuroscience text).

Our DS went on to visit a paediatrician 4 times and had an EEG (due to the regularity of the seizures. The doctor said he wasn't overly worried about them as the longest was about 3min. The EEG came out normal but apparently that can be inconclusive, and the paed considered anticonvulsant medication, but said that the side effects outweigh the benefits if the seizures are only brief in duration (less than 10/15 minutes). He said that the meds would have to be administered daily (DS hates meds) and can slow a bub down. I've worked with some kids with convulsive disorders and CP and seen some of these side effects so have held off on the meds.

I'm interested to hear more of your experiences with the medications. All the doctors wanted to know about family history, and my family and DH's said - none, however, after talking to MIL, she said that her two other sons used to 'space out' after hurting themselves (sounds like absent seizures).

Anyway I've gone on a bit, but I think that's about it except for people out there who have never experienced them - they scare the hell out of you and I'll be looking out for them with bub 2. We're still wary with DS (if he gets sick or bumps his head) but just monitor him now.

PS I've also found a few friends of friends whose bubs have also had convulsions now (so a bit more common than I thought.) ;)

[Lallas' Mum]

Pegasus,

Both my sons took phenobarbitone (60mg daily). It hasn't made them too much different other than the fact the seizures stopped. My first son had trouble sitting in one place two long. He was marginally better off the meds but really not too much different. My second son hasn't been on meds long enough to assess properly yet.. But I will let you know.
My sons were diagnosed with benign familial infantile seizures. Benign meaning of no long term effect, familial meaning it runs in the family (DH had the exact same things happen to him as a bub) and infantile meaning in only affects them in infancy. The problem is without meds the seizures would become more frequent and more severe. DH and I refused to wait until the had seizures of 5 minutes or more before medicating as by then it is to late to prevent brain damage. Every time they were starved of oxygen brain cells died and though up unitl present their seizures remained under the three minute mark were just weren't risking it. Especially knowing that as time progressed so would the seizures (until the tampered off at 11-12 months of age.)

It is a lot to deal with. Especially when you know they were no explaination given as to why. Neither of my sons had temperatures either. Neither were stressed, neither had bumped their heads.

I am shocked as to how common seizures are. Whether they be febrile (temp related), heriditary or from other medical conditions.

Just to let other parents know - if your child has a seizure the procedure is to roll them onto their left side, make sure they can't bump themselves against anything if the are fitting. Time how long it lasts. It may seems like ages but in reality it can be as little as 30secs. It is very important to take note of the duration as well as exactly what is happening. And of course ring an ambulance especially if it is their first and if it is causing breathing difficulties.

[amandajane]

my daughter had meningitis at 3 weeks (she will be 2 next month) which resulted in seizures.

She is still on anti-convulsants (clobozam) and I wont get on my box about the rigma role we have to do every month to get her meds.

I have noticed doctors very reluctant to say much.

Our paediatrician is useless, he charges a fortune to tell me how lucky I am, what a miracle my daughter is, then weighs her, measures her head and says see you in 3 months.

Sorry this wasn't supposed to turn into a whinge.


the meds??? I dont know my daughter without them so I cant compare, but she is by no means slow. Her development has been slow but consistantly so. I guess I am lucky as we have had poor follow up, her dosage has only changed once since she was 2 months old and she is now almost 2 (slight weight diference there), but I have been keen to get her off the meds ASAP.

I feel for you both seizures are a terrible thing for a mother to watch.

[will&samsmum]

Hi, my namer is Emma and my 18 month old son has Epilepsy due to a rare brain condition. He is on a mixture of anti convulsant medication.......Phenobarbitone morning and night, Dilantin morning and night, Topomax morning and night and Clonazapam morning and night. We use Midazolam to control his seizures wghen he is having one. These meds have definetly effected his develpoment. His gums have started to thicken and protrude from the Dilantin. The Clonazapam is part of the Valium family and it zonks him out and so does the Phenobabrbitone and the Topomax puts him on a hyper. Even being on these meds he still has a seizure about once a month. He has every seizure type that you read of.....one of the scariest ones is the one he had and went paralysed down the Right Hand side for 2 hours after...thankfully all movement came back....apparantely it can happen and is called Todd's Paresis???? So many big names to remember all the time :eek: We are very lucky and have a wonderful Neuro and Paediatrician and Physio. To look at my beautiful boy you would not know anything was wrong....he is about 6 months developmentally behind but we are working hard to fix that. We have learnt and grown alot throughout these past 16 months and are definetly better and more compassionate people now. He is our Angel from Heaven and we are thankful for every second we have with him eve :) n though the seizures are so scary and that somehow our life is a waiting game.....we wouldn't change it for the world.

[pegasus]

Thankyou to Williamstonesmum and amandajane along with lallas' mum for sharing more of your stories.

We really do count ourselves lucky for the fact that our DS has been seizure free for about 10weeks now. As lallas mum said - a seizure which in reality lasts 2min can seem like 10min, and when you're watching your child go through it is very scary.

I guess I should have given a bit more of a background of myself before - I am an Occupational Therapist and most of the kids I've seen, who are on anticonvulsants have diagnoses that are not heard of in common conversation. I don't talk about my son's seizures to many people as 10 seizures in 7months pales in comparison to 5seizures in an hour (every hour) which was common for one child I saw.

I agree with you Lalla's mum - more parents need to be aware out there about what signs really need to be taken note of, as initially we were told (by ambos, Dr's in a hospital emergency and GP's) that this was common and just don't worry about them.

As a mum, when I hadn't heard about them being common, I think it was only natural to worry. For amandajane - it sounds like another paed might be the way to go if you think your paed is only doing medical and not developmental checkups. There are different paediatricians out there with different interests and someone who lays any questions to rest is the one I trust the most. Good luck in getting her off the meds. :)

For Emma, I always feel so insignificant in telling my DS's story in light of stories such as what you and your family have gone through. The seizures you've witnessed sound so scary.

It's good to have forums like this to be able to listen to other people's stories and share stories.

[Lallas' Mum]

In light of what pegasus - the reason I started this thread is so we didn't feel alone and so we knew there were other parents out there facing similar challenges.

I must admit I am quite fortuneate as my sons will move on from this stage in their lives unscathed by the seizures and the underlying cause will be outgrown. I really feel for those who have more serious underlying causes.

Amandajane - I agree with pegasus - it may be time to find a new Dr if possible.
It is best to get someone who will not only listen to your concerns but respond too.

Emma - my heart goes out to you. I am so glad that you are staying so positive and that you still see all the wonderful things that make up your son.


Anytime anyone needs to chat - feel free to PM or email me. Remember you're not alone.

[will&samsmum]

Thank you for your kind words of support and comfort.........to Pegasus......please don't evger feel insignificant telling your beautiful sons story - his symptons may not be as bad as others but to you, your family and your life it is just a devestating and heartbreaking. It is wonderful to hear that you are 10 weeks free of seizures....YEH!! Has he had an MRI???? Does he have a good Neurologist???? Interesting that you are an OT....William has Occupational Therapy every fortnight....it has been extremely beneficial to his progress. You are right about the long name.....Williams is Periventricular Nodular Heterotopia!!!!! Good one heh??? It took me about 6 months to remember it.

To Lallas Mum..........thanks for your kind words. William has made me see the beauty in everything around me and has taught me to make precious every minute of evry day. It is so wonderful that your sons will grow out of having seizures. What a wonderful feeling of relief that would be....to know there was an end to the constant waiting game of when the next seizure will be.

To amandajane....definetly get a new Paediatrician.....if you are in Brisbane I can recommend a fantastic one.

Anyway better go....William is being measured for his standing frame tomorrow and it is very early....lovely top chat to you guys....my email is lindberg@aapt.net.au if anyone wants to chat...Take Care ;) Emma

[pegasus]

Hi guys,

To Emma - our DS had an EEG (not MRI) which came up with nothing. I've been told that you never can tell as sometimes the child can still have a neurological condition without anything showing on the EEG. I was also a bit wary of the results as to get him to stay still he had to have a sedative which slowed down his brain activity for the reading anyway.

Anyway, at least we can say we've had the test, but (for now anyway), we just watch him very carefully whenever he bangs his head or gets sick.

It's always good to share stories - i guess that's why I enjoy bubhub so much :D

PS Good to hear you've had a positive experience with an OT Emma - most people don't know what an OT does unless they come into direct contact with them. Have fun getting your frame measured tomorrow :)

[will&samsmum]

Hi All,

To Pegusus - William has his standing frame and he loves it. He looks so cute and I can't beleive how tall he is when he stands up. The MRI was the only thing in the end that showed up what William had....he had numerous EEG's, lumba punch, heaps blood tests and other tests but nothing showed until he had the MRI. That was scary as he had to be sedated but in the end we really had no choice and fortunately he came through it OK and in a way it was a relief to have a diagnosis and a name for what was happening.

You're right when you say it is good to share storie.......you learn so much and hopefully help & comfort others.

Take Care
Emma ;)

[amandajane]

To Lalla's Mum, thanks for the topic. It's nice to talk to other people in similar situations.

To everyone who suggested I get another paed - HOW????. I was going to go and ask my family GP about it, but dont want to sound like a whinger. Anyway our local doctors surgery was burnt down about a week ago (along with all our medical histories).

To Emma, MRI's are scary, my DD has had 2, but what a releif to have an answer.

Amanda

[will&samsmum]

To Amanda...........what state are you in?????? We were advised at an early stage not to go private until William turns 18. I have learnt that you have to demand it. My suggestion would be writing to the SuperIndendant of your local hospital and explain your situation and attach a referal from a GP and ask to start seeing a Paediatrician. All of Williams stuff is done at the hospital...he has his own Neuro, Paediatrician, Physio, Occupational Therapist, Speech Therapist, Eye doctor, ear doctor, dentist, orthopedic specialist......none of this has cost me a cent and will not until he is 18. I have had to yell and scream and in some instances look like a total nut case but I have found it is the only way to really get them to listen and do something. Our Paediatrician is wonderful.....she is the one who has got everyone else involved. We go to the Royal Brisbane Childrens Hospital and it is just wonderful. I wrote to the SuperIndendant as I was not happy with his eye doctor and was transfered to the one I wanted. And shouldn't your Doctors surgery have everything on a backup disc??? I would be absolutely furious if they did not.

You are right the MRI is very scary. William stopped breathing the first time and had to be inschubated???? back and then we had to let him go through it all again the next day but yes it was a relief having a name for what was going on.

Take care :)
Emma

[Lallas' Mum]

Amanda,

I know how you feel about not wanting to sound like a whinger but just keep telling yourself "I want this!!". I just talk yourself up and say what you are feeling. I found it was hard to do with my first son. I guess I am a little seasoned now having been through it all once before.
I always use my GP as a second opinion. I have been seeing the paeds at my local hospital as well as Dr Applegate and Dr Cairns down in Royal Children's Hopsital in Brisbane. I have found them to be great.
I found the easiest way to confront my concerns were to write them down on a piece of paper and take it with me to a consulation and simply read in point form what my concerns were. It seemed to make me say the things I was afraid to.
I felt so much better from doing so.
I am so glad neither of my boys had MRIs. My eldest had a cat scan for which he had to have a general anaesthetic for. It was so scary. We opted to do blood tests and an EEG with Zak and if nothing showed up on those we decided to wait and see how he went with anti-convulsants and see whether he too had "grown" out of the seizures by the age of one. His development has been fine so we know that there is nothing too serious underlying.
We simply couldn't bring ourselves to go through it again. It is far too scary to see them with all those tubes and drips connected up to them.

Emma - I am soooo happy to hear William likes his walking frame. It is wonderful to hear that his Drs are helping along so much.

[will&samsmum]

Hi Tracey.........Do you mean Dr Appleton????? You wrote Applegate...maybe there is two. We see Dr Appleton and we have seen Anita Cairns also but I don't feel she is the best for William. I prefer him to see Dr Kate Sinclair or Victoria. Dr Appleton isjust the most wonderful person I have ever met. He is so caring and knowledgable....he really has been the light at the end of our tunnel. We only see Dr Appleton and one of his doctors stands beside and takes notes. Isn't the Royal Childrens Hospital just fantastic. They are all such wonderful special people even down to the Cleaners and Canteen staff. We are up there at least once a fortnight....it has become very comfortable and familar to us...sounds a bit weird....but it really has been our home away from home. I also write down questions and take with me....Dr Appleton calls it my "little pink book"........I ask every question I can think of....even if it seems stupid to him he always answers my questions and eases things in my mind. We also have a wonderful Paediatrician up there called Dr Anne Kynaston......she is also fantastic. They have all been looking after William since he was 10 weeks of age and they really have become part of our family......they are all so much more than just Doctors to us. I am also very lucky to have a wonderful GP....Dr David Schultz and he used to work as the head Paediatrician at the Hospital so he knows all of Williams Doctors and they all write to each other and talk on the phone about William. He also has a Special needs daughter so he is a very good support to us. Why are you glad you didn't have a MRI????? What do you have against them????? William had a bad problem the first time only because there was no Anethatist available so the tried to heavily sedate him instead of putting him under the General but the next day The Anethatist was there and they put him under a general and all was good.....what really is the difference in what your child had??? He was under a general????? Just curious as to your thoughts on this. I truly believe in MRI's when it is a situation like Williams but everyone to there own opinions...I'm just curious as to why you feel this. I used to be scared about all the drips and tubes but I changed it around in my head....I now see them as "friends" helping my son to be all he can be........mind you I have seen millions of tubes, drips and needles so I am probably numb to the experience. Alot of people are a bit scared of his standing frame because I suppose to the "normal" people it does look a bit scary but you know what.....to me it is more beautiful than any rose in the garden......it is also my sons "friend" and will help him to be all he can be. Maybe if you are in Brisbane we could get together for a coffee......we are on the North Side of Brisbane. Anyway......great talking with you.

:) Take Care
Emma

[Lallas' Mum]

Dear Emma - YES I did mean Dr Appleton - not sure what the whole Applegate thing was about?!? Must a been one of those moments.

I haven't got anything against MRIs - they are a miracle of science. It is just the whole general anaesthetic part that really scares me. There is some family history of really bad reactions to GAs that could prove potentially fatal.
The thing with my boys is that their seizures don't impede development and they do "grow out" of them. The exact underlying cause is unknown. It is believed that it may be a defeiciency in the sulphate tract of the brain. Regardless of the what exact underlying cause is - there is no significate abnormality and by the time their first birthdays pass the seizures should have subsided. Pretty much the basic tests were performed to ensure there wasn't anything more serious behind the seizures. That is why they are classed as benign.

I can't even begin to compare myself with your situation as the only real comparison is that our sons have seizures. It is people like yourself who have been affected by more serious conditions, yet seem to take it all in their stride, that give others the strength and clarity they need to overcome their own obstacles. - Thank you for sharing your stories (and progress reports) with us and thank you for giving me the strength to move through this stage in our lives and to feel blessed to have two beautiful, loving sons.

[pegasus]

Hi guys,

Just popping in again to say you can never be too sure. Sunday's my sleep in day (I get up on Saturdays and let DH sleep in then). Anyway, I was woken up at 8 to DH looking after Aiden as he'd had another seizure. He said he'd been mopping and Aiden had slipped backwards and bumped his head. The seizure only went on for about 1min, but it takes so much out of him. I took him back to bed afterwards and he slept till about 9, but was out of sorts all day.

This time he also went into an extensor spasm, but this didn't seem to last too long (we bent him at the hips to break it up) and then he went completely floppy (that's when I took him to bed). When he woke up his tone was fine, he just kept letting out cries all day as though he must have a really bad headache. (I did give him some nurofen, but nothing seems to help too much when he's like this.

Just goes to show that you can't be too certain - I thought we'd seen the last of the seizures as he's had a fair few bumps (some I thought were severe) in the last few months since starting to walk, but now I've decided you can't predict it.

Anyway, was just updating you all. Hope all's been good with all of your bubs:D

[will&samsmum]

To Pegasus............BUGGER!!!!! He was going so well.....10 weeks without a seizure. Are you OK???? It is a horrible feeling....just when you think things are going Ok you are hit with a big dose of reality............I hope you are OK. It's like your world comes crashing around you all over again. William is 3 weeks seizure free at the moment and I am feeling very nervous every day as his seizures usually come once every 3 - 4 weeks. It is a horrible waiting game. May I ask what an extensor spasm is????? I haven't heard of that one yet?? The last seizure William had he went paralysed down the right hand side afterwards and that is called Todds Paresis....so many names to remember :eek: William also gets bad headaches after his seizures and nothing really calms them. I hope you are OK and not feeling too sad.......I know that Williams seizures can really effect my emotinal well being.....are you taking him to see your Neurologist after that seizure???? Anyway, I am thinking of you and I really feel deep down in my heart for you..........I have attached a poem that someone gave me one day in one of my darkest moments....it has really given me strength and helped pull me through.....hope it helps you too. I'm sending a big cuddle to you and an even bigger one to Aiden.

HEAVENS VERY SPECIAL CHILD
A meeting was held quite far from earth
It was time again for another birth
Said the Angels to the Lord above
This special child will need much love
He might require extra care
From the folks he meets way down there
So lets be careful where he's sent
We want his life to be content
Please Lord, find the mother who will do
A very special job for you
She will not relise it straight away
The leading role she's asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon she'll know the privaledge given
In caring for this gift from Heaven
Her precious charge so meek and mild
Is Heavens very special child

Take care of all of you.
Talk soon
Emma;)

[pegasus]

Thanks Emma

That's a beautiful poem. Poor little man was still very upset today. It's odd - he'll seem fine one minute, then the next he starts screaming - I can only guess he's got a killer of a headache.

You're right - it does both me and my DH in to see him like that - we both wish we could take his pain away.

Good to hear William has been seizure free for a few weeks now. Touch wood - there's not another one anytime soon.

Extensor spasms are when the whole body stifffens up (neck stiff, legs and arms out and straight). Basically it shows a neurological response (it's a tonal change). We'll see how he goes over the next week as our paediatrician had said unless we saw the seizures become different (longer) and we'd had the EEG with nothing appear, the dr still thinks he'll grow out of them. Since he's only 20months, he's still young enough. By the time we get him to the drs he seems well again these days, so the paed had said since we know our son better than any dr (we've now witnessed 11seizures), we'll know if it's something different.

Hmm...not overly sure, but the only thing they could do from here would be an MRI I think and if the EEG came up with nothing what's the chance the same would happen with the MRI?

[Lallas' Mum]

Dear Pegasus,

I hope Aiden is feeling a little better today. What a set-back. :( You just start to relax a little when all of a sudden it seems your back to square one. Do keep us posted. I'll be thinking of you.

Emma - Glad to hear William has still been seizure-free. :D I hope you make through the next couple of weeks without incidence. I was extremely moved by that lovely poem. I was really fighting back the tears and nearly choking on the lump in my throat. I'm sure there are plenty of parents out there that can be soothed by that poem.

Mrs Casper - how old is your son now? It sounds like a similar situation with my two sons - no real known cause. My eldest has been seizure free since July 03 and has been off medication since this exact time last year. All has been fine. I am hoping we will see the same happen for my second son. Zak has been seizure free for about three weeks now - all is going fine (touch wood!!!!).:)

I do hope you all have a merry Christmas if I don't post again before then. :D

[will&samsmum]

To Pegasus..........I would definetly recommend an MRI......William had a couple of EEG's and that did not pick up any problem.....the only test that William had, and he had heaps, that picked up his condition was the MRI.......so it worked for us and our beautiful son. Thanks for the explanation on extensor spasms. That poem is truly beautiful isn't it???? It has really helped me through some hard times. I hope that you and your DH are feelng a little better about things and I hope little Aiden is feeling better too. My thoughts are with you guys each day. Take care of all of you.....talk soon.

Hi Tracey........That poem made me cry my eyes out the first time I read it! I'm glad you liked it. Thanks for your warm wishes for William. You also have a wonderful Xmas if we don't chat before.

Take care
Emma:p

[pegasus]

Hi again,

Thanks for all the hugs and best wishes for Aiden. He's been doing a lot better today. I was up with him at 3.30am and he was very fussy around eating times but other than that was doing really well. I had wondered whether the seizures were one of the reasons that he's small for his age - just because he usually doesn't eat well for the next week. He refuses any food offered (believe me we try tempting him with all his usual favourites!). The doctors have said he's just one of the small kids (he's not too bad anymore - 11kg at 21months, but when the seizures were more frequent he was only on the 5th percentile for his age).

It's funny - you want to believe the doctors when they say - it's okay - he'll grow out of them, but when he's sick I can't help thinking there must be something else going on - otherwise surely his symptoms wouldn't keep on days down the track.

I'll have to ask him when he can tell me what's going on for him - LOL

But seriously - thanks for all of your support and take care all of you.:)

[will&samsmum]

Hi Pegasus.....I am so glad to hear Aiden is feeling a little better. William was also small for his age until he was diagnosed with his condition and they put him on medication and then he thrived. He is huge...... 19 months & 15kg!!!! Ha! The doctors were amazed as one of our stays in the hospital - an 8 week stay:eek: - he was having seizures 24 hours a day and it went like this - seizure, stop to eat, seizure, stop to eat....etc. The doctors loved it because apparantely some epilepic conditions stop the children from eating and they have to be fed with a "button" through their tummy. I really think you should see a Neurologist and have an MRI........in my experience the symptoms seem to be going on for too long........and really how can he say they are just going to stop if he hasn't seen what the cause of them are? Maybe he saw all he needs to on the EEG?? Who knows....I'm sure he is very good and doing the best for little Aiden. You will know what to do......Mums always do!!!! Do you see a Paediatrician for Aiden???? Are you and your hubby small???? Does it run in the family???? Anyway, it is so good to hear things are calming down with Aiden. How are you and hubby???? Hope you are both coping Ok.

Big cuddle to you all.
Take care.
Talk soon
Emma:)

[pegasus]

Hi again Emma,

I guess both my DH and I are both small, (I'm about 5ft and 52kg (when not pg), and DH is about 5'9" (I won't reveal his weight - but he's no heavyweight). My mum and I have talked about size of parents -v- size of kids and my mum puts no faith in it - both my sister and I are small and our brother is 6'3" and big - definitely both same parents - LOL. My dad and his brother are also both sides of the spectrum. Mind you my brother's wife is 5'10" and their 7yo is almost as tall as me.;)

Aiden is actually in proportion tho - he's only 80cm tall (had to get the tape measure out to do that just then).

We do have a good paediatrician for Aiden (we had a good one in the Northern Territory too), but I know a fair few people who have seen the one we're with now and they like us have good faith in him. He seemed to think if there was something more sinister than something he'll grow out of then the seizures would've become longer (longest has been ~2min). He's doing well today and it looks like I've got all of January off work - so I'll be monitoring him a lot more during that time. (I normally work 2days a week). The dr had also said if we were worried about more seizures we could look at medication, (but I'd rather an MRI before that to rule out anything else.

Thanks for your wishes and support- DH and I are back to normal, just monitoring and checking in on our DS a bit more than usual (he also woke at 3 again last night - be glad when his sleep goes back to normal):D He also ate well tonight so that's a good sign he's feeling better. I'll see how he goes over Christmas (no chance of an appointment at this time, but may call his paed in the new year to discuss the idea of an MRI (guess I'm just a bit scared of MRI showing up nothing - like the EEG).

Anyway - good times at the moment - how're are things with William and his standing frame? (I'm guessing he's still seizure free - yay!):D

[will&samsmum]

Hi Pegasus,

Hope you guys are all well and doing OK. That is great that you have a good Paediatrician and have faith in him....that certainly makes life easier. They actually put William on medication - Phenobarbitone - before his MRI as they did not want him to have any more seizures until they knew what they were dealing with. Unfortunately William is on a rather large cocktail of medications :( - Phenobarbitone, Dilantin, Topomax & Clonazapam. We are slowly weaning him off the Phenobareb, Clonazapam & Dilantin so hopefully within 6 months he will only be on the Topomax. I can't wait as the more we wean him off the more alert he is getting - all epileptic drugs have sedatives in them and clonazapam is part of the Valium family so basically I can't wait to get him off the majority of drugs. I agree with you that you should have a MRi before medication begins. How is Aidens oxygen levels throughout his seizures???? They are not supposed to go below 90 or that is when brain damage can occur. Does his tongue swell up and block his airways at all....this happens to William unfortunately. Do you have anything to give him to bring him out of a seizure??? We use Midazolam up Williams nose......also part of the Valim family........it snaps him out of it within a couple of minutes.........the nurses in Emergency at the Hospital call it Midazo-SLAM!!! HA! :D The longest a seizure has lasted for in William is 3 hours....it was horrible no one or nothing could stop it.

Thats great that you get the whole of January off work.....what sort of work do you do?????

We were given a month off all Physio and hospital activities yesterday........this seems awful to say but I feel like a weight has been lifted off my shoulders. We have been at the hospital at leats 1 to 2 days a week for the past 17 months.....mind you we haven't had a hospital stay since the 31st May:) .....TOUCH WOOD.......that is the longest we haven't stayed in hospital since William was born. We are all glad for the break. We will still do his excercises at home but not to the extent we have been.....I think William deserves time off for Christmas. Sometimes I get worried that William will end up resenting me because I make him work so hard every day but hopefully he will just see I did it to help him. He just loves his standing frame and stands in it 3 times a day for 30 minutes. I have already noticed it is helping the strength in his legs. We started Speech Therapy last week.....quite interesting and should help William heaps.

Anyway, I am glad everything is going back to normal and that you and hubby are slowly relaxing again.

Big cuddle to all.
Take care
Talk soon
Emma;)

[pegasus]

Hi again - just a quick one to answer your questions.

Aiden has never had a seizure in front of any drs - guess that's why they err on the side of the fact that they believe that he'll "grow out of them". So he's never had his SATS taken during a seizure (only after). By the time we (or the ambulance) get him to the dr he's still unwell and upset (they call it post ictal), but not seizing. That's the reason our paed last said that it was up to us whether he put Aiden on medication, but he said that the side effects of the medication might out weigh the effects of his seizures at this point (while they are less than 10min in duration). That's why we've decided to monitor him at the moment rather than put him on medication.

I really feel for you and the length of time that William has his seizures. The longest I've witnessed was about 15mins and it was a child who was in a session with me. Which brings me to my work. I've been working at the University for the last 6months tutoring students, but for 2years before that, I worked in private clinics in the Northern Territory and for 8years before that in the public hospital system in WA. While I was in the public system, I also went out to schools etc as I was mainly based in a country town where there aren't private OT's or OT's in the schools. This is where I mainly saw the kids who had the really obscurely named conditions. I'd usually see them at the hospital up until they were school aged, then organise programs for them at school when they got to school. I just discovered a therapist near where we're living at the moment who I've spoken to about getting some children's groups started with, but I'm conscious of the fact that I've got about another 6months of work in me before some time out is needed (I also don't want to work more than 2days a week before the kids go to school).

I totally agree with giving kids time off therapy. In my last jobs I worked really closely with the speechies and physios. sometimes we'd do joint sessions and other times we'd give a block of time from OT, then a block of time from SP then a block of time from Physio. It would depend what suited mum and the child as at the end of the day, it doesn't matter how fantastic the therapist is, if the program isn't able to be carried out at home then it will be less effective. I'd always tell the parents I worked with that I might have a 45min session with them, but there are 24hours in a day and 7days a week. The core principal of OT is to try to integrate the therapy into areas of daily living so that you don't even realise that you're doing therapy when you put the toy just out of reach of your child to make them reach etc. However, having said that, there are times when a stretch program or splinting has to be carried out and at a young age, the child doesn't realise why they have to do it, so breaks have to be given. When they're older it's a bit different as they get to make more choices in what they think is important for them to do.

Anyway, enough about me, but that's my story.:) (Did I say this was to be a quick post?;) )

[will&samsmum]

:(

Hi guys......William just had a seizure:(

:(

Feeling very sad:(

Emma

[pegasus]

(((((HUGS)))))

So sorry for you, your DH and William Emma.:(

I had my fingers crossed for you all.

I hope it wasn't as bad as they have been. Let us know more as you feel better.

My thoughts are with you - take care

Veronica xx

[will&samsmum]

Hi Veronica,

Thanks for your kind thoughts and wishes. Unfortunately William had another seizure yesterday:( ........the heat here is really knocking him around. Fortunately they were both only minor seizures and lasted for 5 - 10 minutes....we put Midazolam up his nose each time and that snaps him out of it. He is OK....totally back to normal straight afterwards. I am feeling alrigt....still a little nervous as his seizures usually run in 3 day clusters so it is the third day today and we might just see another one today. I really hope he doesn't have one tomorrow as all the family will be around him and it would be a bit of a downer.

Anyway, I hope you and your family have a magical Christmas and that all of your dreams and wishes come true.

Thanks for being there.....it helps more than you know.

I hope Aiden is feeling better and doing well.

Big cuddles to all.
Take Care.
Talk soon.
Emma:p

[pegasus]

Hi Emma,

Was thinking of you and William again and I'm glad that his seizures weren't as long as they have been. Let's hope that it is just the two this time. One of the reasons that we moved back to Perth from Darwin, was that my DH thought tropical weather might be contributing to Aiden's seizures. One of the Drs had said that (when we couldn't find a cause) he could have an unknown tropical bug as there were more bugs in humid weather and he could be picking them up due to his low threshold? The paediatrician then suggested we put him onto Vaalia yoghurt so he could have some probiotics (the dr said it was the only one where the bacteria was still live by the time you ate it). Have to admit when I put him onto it was one of the long periods between fits and I haven't been giving it to him lately...hmm... think I'll put him back onto it.;)

Fingers crossed that the 3day cluster is a thing of the past, and that he's able to enjoy opening presents with family.

Anyway, heres hoping that you and your family have a great Christmas (can't believe it's Christmas Eve), and lots of beautiful family times are shared.

That's what we're looking forward to - it's a pretty special time to share around our special boy with grandparents and cousins. Somehow it feels a bit odd knowing there'll be someone else along next year.

:D
Love Veronica xx

[will&samsmum]

Hi Everyone.....Happy New Year!!! Hope you all had a wonderful Christmas and New Year and tht it was seizure free! William had a wonderful Christmas....he was so spoiled by everyone.....I have no room for all the presents he received. Unfortunately we had a couple of seizures throughout the Christmas period.....22nd, 23rd & 24th December. We went away for our first family holiday to Alexandra Headlands at the Sunshine Coast. It was just beautiful. William had one seizure while we were away but it was only a small one and he came out of it all by himself so thats ok. I have some good news.......I was proposed to on New Years Eve!!!!!!!:) It was very special.......he got down on his knee just before midnight and said that I was his best friend and that he loved me very much and would I do the honour of marrying him and the a heap of fireworks went off right behind him. It was just beautiful. I have taken William off another drop of his medication Clonazapam today....that is the drug that is part of the Valium family so everyone cross all their fingers and toes that it goes all to plan. If we can go OK for 2 months then we can drop the final night time drop and he will be Valium free!!!!! Yeh! I'm feeling a bit nervous but excited also because when we took him off the midday drop he has come ahead in leaps and bounds so I can't wait to see how he is without the morning drop. For the first time since William was 10 weeks old we have been given one month off all Hospital activities. His medical team got together and decided that both William and us needed time out. I am feeling so anxious as we always have worked really hard every day and for one month we are not allowed to do anything. We star again on the 17th January. I feel bad, like I am letting William down....I feel unsettled.....I can't wait until we start up again. Anyway, just thought I would catch up and say Happy New Year.....take care!

Pegasus..........thank you for all of your kind words and thoughts. Your support means a great deal to me and helped me alot. That is interesting about what you said about the humidity and yogurt. I am going to get some and start giving one a day to William........it can't hurt and he loves yogurt. Hope you and your family (and your little bump!) had a wonderful Christmas. Take care of you. Talk soon.

Love Emma;)

[MamaRabbit]

Hi everyone - I haven't been on bubhub for a few months and was surprised to read so many stories about seizures. Just goes to show how common they are huh!

I think a few of you already know me but my beautiful little boy, Charlie had seizures at around 6.5 weeks of age. Before I knew what they were I mentioned it to the GP (they were absent staring type seizures), needless to say she wasn't worried and dismissed it as feeding related etc. I wasn't convinced but kept an eye on him. A few days later he was still having them so I took him back and thankfully he had one right on cue in front of the GP. She diagnosed it immediately as a seizure and sent us to the hospital in an ambulance. You can imagine the fear and confusion at just 6 weeks after giving birth.

At the hospital the neuro on call tried to tell us it was reflux! But he did order some vitamin deficiency testing etc. Again thankfully after a few hours in emergency Charlie had a seizure for the neuro to witness so an EEG, MRI were ordered. He explained to me that all of this testing is expensive so they try to rule out the simple things before embarking on the bigger things. Fair enough I suppose, but as he said now that he had witnessed it he had no problem in ordering every test available.

Charlie's EEG was clear (and subsequent EEG's have been clear too). The MRI however did show a tiny speck. So small that a few of the neuro's had to debate whether it was there at all, but yes it was there and that pesky little speck was the cause of the seizures. As a result he was put on Phenobarbitone. After a few months on that he started to develop really bad side effects - shouting, very irritable, a little hyperactive even, bad sleep patterns. After many more months we weaned him off and put him on Topirimate - this has made the world of difference and he is just the most gentle lovely little boy - he looks perfect in every way (as I'm sure all your little bundles do too). So alert and happy, he rarely gets upset.

Charlie turns 1 year old on Wednesday and has been seizure free for about 10 months (woohoo), he has been on the same dose of meds since he started so he should be outgrowing them very soon. The meds have slowed his development which is a bummer because he is so alert in every other way, but we are taking each day as it comes and building up his strength. So all in all life is good, I feel very positive that Charlie will continue to be seizure free and I expect this time next year he will be all caught up developmentally.

My advice to anyone being told staring or seizures are normal for babies.....insist on getting it checked out. If I went along with the reflux diagnosis I dread to think where we might be at now. Having caught this so early we have managed to get great care and early intervention for the development delays.

P.S) haven't heard the Vaalia yoghurt thing before but it just so happens I give it to Charlie quite regularly anyway - both the baby version with cereal and just the plain Greek Style Vaalia is great.

Hugs to all,
Elle and Charlie.

[amandajane]

I just wanted to say that I am still here reading the things you are sharing, especially to Emma and Veronica.

To Elle, your story sounds very similar to mine. Except that my daughter had the shaking kind and we know what caused it. But the not knowing if there are any afteraffects and worrying about any 'delays' I can relate to. My dughter had her seisures at 3 weeks and we left the hospital just over a month later. She started walking at 16 months and just turned 2 a few weeks ago and has a vocab of about 30 words but seems bright and 'normal' in every way. Her MRI from August last year showed 'scarring' and I am anxious to have another to compare, but the paediatrician doesn't want to do it just yet.

Anyway like I said I just want to say you are all in my thoughts.
Take care.

Amanda

[will&samsmum]

Hi Amanda,

Thank you for keeping us in your thoughts. I am having a bit of a hard time at the moment..........we have had one month off all hospital and medical treatments.....the first time since William was 10 weeks old. At first I was very anxious about it but after relaxing for the past month I now am feeling overwhelmed about starting everything up again next week. We were starting to feel like a "normal" family. I feel sick about getting back on the rollercoaster ride of the weekly hospital visits again ut know that I have to for Williams sake. Yesterday I was told that our niece (8 months old) is walking and I haven't been able to stop crying since........don't get me wrong I am delighted for them....it is just wonderful.........I just wonder when our turn will come........I'm starting to lose hope. William is 20 months old and no where near walking.......they have started to talk to us about the posiibility of a wheel chair........I pretended that it did not matter but really it is breaking my heart.........I know it is not the worst thing in the world and I know there are so many worse cases out there than William but it is still making me feel sad and defeated..........I just want it all to stop now. On a good note he hasn't had a seizure since December......TOUCH WOOD......and we are still weaning him off the Clonazapam which is going good. On a wonderful note.......we are pregnant again!!!!! We are thrilled but scared.....all the what ifs!!! Williams condition is not a genetic one so they feel that it should not happen again but there is always the chance it could. We are trying not to think about that but it is hard not to. Anyway....thanks for letting me know that you are still out there..........you must have known I needed to hear that. Take Care Emma

To Elle........welcome to our discussions........give a big cuddle to Charlie.........just to let everyone know Charlie has the same condition as William and Elle & I talk reguarly. Take Care Emma

To Veronica............how is Aiden....we have been thinking of you guys.......hope to hear from you soon. Love Emma

[Refresh]

HI guys, it was interesting to read all your stories, my heart certainly goes out to you:)

I am lucky not to have a child who has had seizures but my SIL has just had a baby (4 weeks old now) and she has started having up to 17 seizures a day. Her legs go all stiff out one direction and her arms the other direction and she looks all vacant in the eyes and stops breathing...when she comes out of it she pants like she's trying to catch her breath,. It took a wekk to get in to see a paed who then told them it is probably colic:confused: Strangest colic Ive ever heard of. Have you guys got any sugestions or advice? Its pretty scary

Thanks
xx

[pegasus]

Hi Emma, Amanda and the other mum's who have posted here

Sorry I haven't posted in this one for a while, I somehow missed when they were updated. Our good news is that Aiden hasn't had anymore seizures since I last posted (Touch wood).

Emma - I was thinking of you over Christmas, so hoping that the one day of seizures was it, but sad to hear it wasn't. However, good to hear no seizures since that time. Fantastic to hear about your pregnancy - we had our first OB appointment 2 weeks ago and my DH's first question was - what's the chances of our new bub having seizures like our DS - of course the OB couldn't say, as they don't know what causes his. It's funny though - I only realise how much it affects DH when he says things like this - why aren't men talkers like us?.:rolleyes: The Dr did say there is an increased chance that new bub will have seizures - but who knows? I figure we have to take it as it comes. I have friends who have 2 little ones and both their kids had seizures, maybe Lalla's mum can come back and have a chat. As for the walking - it might be easier for me to pm you about this. In brief, my DS didn't walk till 16months which was pretty late I actually think his seizures had something to do with his small size and a couple of his milestones coming late. All the paediatricians said that there seem to be no lasting effects, but they don't see what he's like the week following when he refuses to eat, becomes extremely clingy, sleep patterns are out the window and he'll seem to be fine, then all of a sudden lets out an awful scream and acts as though he's got an enormous headache. They tell me kids normally go up and down - well let me tell you - I've seen my son on other weeks, and his "down" weeks coincide very closely with him having seizures. We can only hope that the doctors are right and he is 'growing out' of his seizures.

Amanda - fantastic that your daughter seems to be achieving her milestones well - when was her last seizure? As for the scarring - scary stuff, however, I'm guessing that your paediatrician doesn't want you to get over worried about it as the brains of kids this age can do wonderful things in terms of learning. (If you want some more info on this let me know and I'll pm you).

Katie - I'd strongly recommend your sister gets her baby to a different doctor - definitely doesn't sound like colic to me. Definitely sounds like seizures - 17 a day definitely needs further investigation. Look out for paediatricians with different specialties - some are more developmentally oriented, some more allergies etc. If in doubt ask around any practitioners you might know. I know as a therapist, I could not recommend a particular doctor (due to professional ethics), however, whenever I had a mum wanting to know about whether a choice of dr was a good one for her child's particular condition there are things you can suggest be looked into. Goodluck.

Anyway, sorry it took so long for me to get back to you all, take care.

Veronica

[MamaRabbit]

I would suggest not settling for the colic explanation and tracking down a another paed who might refer you to a neurologist it is worth getting checked out sooner rather than later...I got the whole colic, reflux thing when I first suspected something was wrong. Persevere and find out what the cause is, I dare say there is a cause if she is having so many.

It is scary but the good news is that there are plenty of causes....be it epilepsy or a more unknown cause such as PNH, or it could be something as simple as a vitamin deficiency that can be treated, it may be genetic it may not.. Whatever the cause, the human body is incredible - there are loads of people walking around out there who are prone to seizures and we would never know or guess it. The medicines and treatments are wonderful and the little ones are very resilient. Don't get me wrong we have had side effects with medication etc, but you find the one that suits and allowing his body to heal and repair is the most important thing. A year on medication might allow the brain to create new pathways so that they abandon and isolate the cause of the seizures and thus no more meds - anything is possible.

Catching these things early allows you to lend an extra helping hand with their development also. A tough start is bound to slow them down a little but they get there, they catch up in the end.

Good luck with it my thoughts are with you and your SIL, feel free to drop me a line anytime.

Cheers,
Elle

(P.S) Emma, I know it's hard watching others crawl and walk etc but stay positive. Little William is progressing bit by bit in the right direction. William has had quite alot of episodes which his body needs to heal from - not to mention the meds, Charlie has only had 2 episodes but the side effects from the meds didn't allow for much else other than cuddling for the first 6 months. When are our boys meant to have had the chance to build up their strength? Imagine you or I training for a triathalon, I know it would take me a looooooong time to get that fit. Our little ones are trying to get strong and learn things at the same time. I'm positive William will keep pushing himself to new levels - slowly but surely.

Keep smiling everyone.

[will&samsmum]

:( William had a big seizure and stopped breathing and turned blue........had to go to hospital in an ambulance :( We are home now and he is OK....a little grumpy but OK.........I'm a bit sad...........

Emma

[pegasus]

Oh Emma - I'm so sad for you and William.

Thinking of you:o and big (((hugs)))

[MamaRabbit]

Hi Emma (& hubby) and William, I'm so sorry to hear that William had a seizure. My thoughts are with you all right now. Hang in there, William is a tough little cookie, I'm always at the other end of this email when you need a friend ;)

[will&samsmum]

Hi Veronica & Elle,

Thank you very much for your kind words and thoughts.

Unfortunately William had another seizure just half an hour ago:(

He is OK now.....I am trying to stay strong and calm for new bub in tummy but it is hard watching his little eyes rool back and twitch.......at least we didn't have to go to hospital with this one......had to use Midazolam up the nose but.....oh well that's life I suppose.

Talk soon

Emma

[Lallas' Mum]

Emma - Big hugs to you and William.

I hope he has stabilised now. I can't think of anything wise to say that could help you feel better right now. Just keep in mind that I will be thinking of you both and hope that all will be ok.

Hugs again<''>

[will&samsmum]

Hi All,

Lallas Mum.....thanks for the hugs and support. William has stabalized....he only had 2 days worth of seizures this time.....usually is 3......good stuff!!

We had our first Ultra Sound today and saw our new babies little heart beat......very overwhelming.....very strong heart beat and all is looking good so far. Baby is due 16th September.

Thought you would all like to share in our news.

Thank you all for your strong support with Williams stuff.

Take Care and talk soon.

Emma:)

[pegasus]

Hi Emma

Great news about seeing your bub's heartbeat. I'm going for our 16week check up tomorrow. So might see bubba again.

Glad there's sort of some good news regarding William and his seizures this time. It was a fair bit longer than since the last time wasn't it and 2/3 of the time. Fingers crossed more spacing out of time occurs.

Take care

Veronica

[will&samsmum]

:( William had another seizure today...........we were at a family BBQ and he had one in front of everyone........not that I care if people see but he already is "under the microscope" as such when family are around and I could have done without it.....he woke up this morning with a high temp. and has had the flu for the last couple of days so I was expecting one. I know they all mean well but somehow there sympathy and caring just sometimes makes it all feel worse....I love them all dearly and they all love William heaps....I don't know how to explain these feelings...I sound awful saying it. William is OK and the good news is I didn't have to give him medication to come out of it...he came out all by himself. I didn't cry until I came home.........he still has a temp. so I am expecting maybe some more. Fingers crossed there isn't any more.

Take Care
Emma

[pegasus]

Thinking of you and your family Emma. It's always awful for our little people to be sick (even without the added complication of the seizures).

Take care,

Veronica xx

[will&samsmum]

:( Had a really bad night...........William had a big seizure - arms & legs flapping around at 1am and we had to put Midazolam up his nose and then another big seizure at 6.30am......he came out of that one himself. Feeling really sad and depressed. He is sleeping now. Thanks for your kind words Veronica...means heaps knowing that you are out there.

Talk soon
Emma

[MamaRabbit]

Hi Emma, so sorry to read your posts about William. Words escape me but please just know that our thoughts are with you and we are here if you need to get your feelings off your chest.

Love Elle.

[anthony26yo]

Hi guys,

I'm sorry to hear about your children and I hope they are doing better now.

My 7 week yr old daughter has recently had some seizures and they put her in Westmead hospital for a week. The EEG showed abnormal brain activity but the MRI and blood tests so far have been fine with nothing abnormal showing up. The genetics team have also done a skin biopsy as she has dysmorphic features. Most of the other tests will take a couple more weeks.

Her seizures would involve eyes rolling back and both arms would move up and done. These are called tonic seizures I believe.


She is on phenobarbitone - 0.9mls twice a day and the seizures have pretty much stopped. However, over the last couple of days she seams to blank out and just stare and her arm will twitch a little. The doctor wants to leave her on the medication for about 3 months and not increase the dosage so as to slowly wean her off it.

I hope that they will find the cause for these seizures and be able to fix them otherwise may she grow out of them soon.


I'm glad I found this site as it's nice to have others to talk to and read through their experiences.

I hope this won't affect my daughters development much. I would love her to be a happy and healthy girl.

Another thing, when she has a seizure she either has reflux afterwards, sneezes or passes wind. Has anyone else had that happening to their child.

Anthony

[pegasus]

Hi Anthony,

Sorry to hear about your daughter's seizures. It's a heartbreaking thing to watch. As my DH says, if they've got a cut, or have banged themselves, you can cuddle them and kiss them better (and put a band aid on). My DS hasn't had the sneeze or wind thing, he just has uncontrollable screaming when he has a fit, and is "really out of sorts" for about the next week.

The extra symptoms could be because she's really young and her body just goes into overload trying to cope with what's going on.

We're lucky, Aiden has been seizure free for about 2months now, for which we are very thankful, but it doesn't stop us panicking anytime he shows a hint of getting sick, or falls over.

All of the parents here have slightly different stories and it's good to be able to share.

Emma - hope all is going well with you and William and your family now. Lots of hugs to you and your bubs.

Veronica xx

[anthony26yo]

Thanks Veronica for your kind reply.

I am glad that your son has been seizure free for 2mths and I hope that it continues.

Take care,

Anthony

[MamaRabbit]

Hi Anthony, nice to meet you even if they are under these circumstances. My son has also been going to Westmead. We were in there for about a week when he was 6.5weeks - (wasn't that just the most vulnerable and confusing feeling at just 7 weeks of age!) He was put on Phenobarbitone but began to have side effects so eventually was put on Topirimate. Charlie got quite irritable a minute or two before his seizure and then was really dazed and lethargic for awhile after. I don't remember the passing wind, reflux etc particularly after a seizure but their little bodies go through quite a lot and they usually stop breathing for awhile so I can understand all these bodily functions happening when she comes to.

The good news is that we caught the seizures really early, as you have done, and he has been seizure free now for 11 months. He has stayed on the same dose of meds since it all began so he should be slowly growing out of them but will be offically weaned off at the end of next month when he will have been seizure free for a year. There is every chance he will never have a seizure again, or he may have a random one if there are some stresses or illness present. It's a bit of a wait and see game but we are really positive that we are past the worst of it and he will lead a great life.

His development has been a little delayed due to all the turmoil and the side effects of the Phenobarbitone - he pretty much missed the first 6 months by being carried around until the Phenobarbitone was out of his system (usually it is quite good for babies but it made Charlie quite irritable and upset). Anyway I figure being 6 months behind now is fine if we have sorted out his seizures. We are starting to make that time up and soon enough he will have caught up. He is happy and healthy in every way so I'm sure your little one will do great.

Feel free to drop me a private email if you want to chat (elenawalmsley@hotmail.com). We see a neurologist at Westmead and until recently were using their Physio and OT (we are now going private for that). Westmead have a number of services that have been really handy.

P.S) does your doctor think your daughter is having absence seizures with the staring?

All the best,
Elle

[will&samsmum]

Hi Anthony,

My son William had his first seizure at 10 weeks of age. His first seizures sound similar to your Daughters where his eyes rolled back and his little arms and legs twitched and moved up and down. He also was put on Phenobarbitone straight away. His EEG showed abnormal activity and his MRI showed up a rare brain condition called Periventricular Nodular Heterotopia.......this means he has abnormal clusters of nerve cells in the lateral ventricles of his brain. This condition has caused complex epilepsy and unfortunately he has also been put on Dilantin, Clonazapam and a relitavely new drug called Topiramate. Interestingly similar to your daughter he also too had minor reflux along with these seizures. Another reasson they initially thought William was having seizures is that he was Vitain B12 deficient.....apparantely that can cause seizure activity. He was given a big dose of Vitamin B12 and that has corrected itself now. William sometimes has vacant seizures were he just "blanks out" and his hand and foot twitches...these are definetly seizures in Williams case. Has your doctor witnessed these "blank" episodes?? In our experience they are seizures in Williams case. I also too hope they find a cause for the seizures...that was the worst part not knowing why it was happening........but even now they know why it is happening there are still so many questions they cannot answer.....sometimes it seems like one big guessing game. How wonderful that the MRI shows no brain abnormalities. William is 21 months old now and he still has seizures. All the medication he is on has slowed down his developmental delay alot. He is about 9 months behind but they are slowly weaning him off the medication so that he is just on Topiramate. He has Physio and Occupational Therapy weekly and the Speech Therapist is now involved. It has and continues to be a long journey but we wouldn't change him for the world. He is a gentle little soul and this journey has taught us more than we could even put into words. We have one of the best Neurologists in Australia and a fantastic Paediatrician and GP. We are surrounded by a wonderful support team. We know that we have been specially chosen to look after William. They tell me that Special children are given to special parents and I truly believe that with all my heart. I am truly sorry that you and your family have had to go through this but be assured you will be stronger for the experience. If you would like to talk please drop me a private email anytime at lindberg@aapt.net.au
This site and these wonderful people have really helped me through some very dark days..........I hope we can be of the same help to you. Please be assured that every emotion you are feeling is normal and alright to feel.......I know from experience the crazy range of emotions you go through. In Williams first year of life we spent 20 weeks of it in hospital and the range of emotions I went through somedays made me feel like I was going nuts. Anyway, I have raved on long enough......I am sending you and your partner a big hug and a special big cuddle for your beautiful baby girl. Please know that you will be in our prayers every night. Talk soon. Take care of you.

Veronica.........William has not had anymore seizures since we last wrote....he has just come through the "slap cheek" virus and that seems to be why he has had the seizures.......anytime his temperature goes over 37.5 he has seizures. He is back to his normal happy little self. How great that Aiden is 2 month seizure free.....go Aiden!!! Thanks again for your support it means the world to me. Big cuddle to Aiden. Talk soon and take care of you.

Elle.......thanks for your kind words and support. Big cuddle to Charlie. Take care and talk soon.

;) Love Emma

[will&samsmum]

Hi All,

Just wanted to let everyone know that William has been weened off the Clonazapam totally :smiliedance: and is doing really well.......TOUCH WOOD!! Next step is getting him off the Dilantin...........then the Phenobarbitone and he will only be left on one drug...Topomax........cross your fingers and toes for us! Hope everyone elses children are all OK.

He is a different boy since we have ditched the Clonazapam....so alert and energetic!!! :yelclap:

Talk soon.

Love
Emma :p

[MamaRabbit]

BRILLIANT NEWS EMMA AND WILLIAM!

Keep us posted on William's progress, I'm sure he will move ahead in leaps and bounds, even more so once the remaining traces of Clonazapam have left his little body.

Fingers and toes are crossed for the successful weaning off the other meds.

[pegasus]

Hey Emma

Does that mean that William hasn't had a seizure for nearly 4weeks?

Fantastic stuff. Keep us informed - but that's the best news I've heard in ages.

Take care

Veronica xx:hugs:

[will&samsmum]

Hi Elle & Veronica,

Thanks for your kind words and support. It has been 3 weeks since William had a seizure........TOUCH WOOD!

Talk soon.

Love
Emma;)

[will&samsmum]

Hi All.........

Just wanted everyone to know .............WILLIAM JUST SAT UP BY HIMSELF FOR THE VERY FIRST TIME!!!!!!!:yelclap: YEAH!!!!!

We have been trying so hard for ages and today he just decided to do it........I can't stop crying......all our hard work is starting to pay off!!!!!

Thought you all would like to share in our wonderful news. :D

Hope everyone else and there beautiful children are doing OK.

Take Care
Emma:smiliedance:

[amandajane]

Wow I havn't checked this thread for a little while and so much has happened. Emma I am so happy for you and William.

My daughter is coming off her meds too as she has been seizure free for 2 years. YAY.:yelclap:

To Anthony, the staff at Westmead are great, esp one particular neurosurgeon. My dd was there for a month when she was 3-7 weeks old. She had meningitis and developed seizures from it. I totally understand when you say you hope it doesn't affect her development too much. But that is the road ahead of us. My dd is now 2 and doing all the normal 2 year old things, except she was quite a bit later than her older brother to walk and her speach isn't great, but there is always that wondering if something will still be affected later.

[pegasus]

Wow Emma - such big things happening!!!:smiliedance: :yelclap:

I guess the fact that he's been seizure free for nearly a month now and you've been able to consolidate some of his skills is really paying off.:D

How's he going with his standing frame? Fingers crossed that:fingerscrossed: he keeps well.

[♥Heaven Sent♥]

Hi everyone,
Well i thought i would post in here as i really need some support right now.DD had a first scare 2 weeks ago and fell off the couch and hit her head she then stiffened up and passed out,she was out for 30secs no jerking or anything.I totally freaked out and called the ambulance.She was monitored for 4 hrs and sent home.The doctors said she had a Pallid breath holding spell.The second one was last night.This time she got upset cause was very tired and my mum took something off her she couldnt have.She stiffened up again and passed out then woke out of it 30secs later then passed out again and then came back.She seemed ok but we took her to the hospital anyway.While in the car she was just staring blankly and i couldnt get her attention then she sort of went to sleep i watched her breathing and she was breathing ok and when i got to the hospital they woke her up.Her obs were ok both times.And second time was sent home again.Today she has been acting weird off balance tired and off her food.I took her to docs for a check up and he asked me what i have just explained to you and his words were"im not an expert on Breath holding but this dosnt sound like a typical one to me.I would say goto you family doctor and get a referal for a paediatrition to get an eeg to make sure it is not epilepsy".So there it is im so confused and stressed out and upset that this is happening:( .I really hope to find out what it is.

[pegasus]

Hi again Jaclyn

Thought I might see you here - I've sent you a new pm too. Just letting you know that I'm sending all sorts of positive vibes your way - I know this is a difficult time.

:hugs:

[♥Heaven Sent♥]

Thanks Pegasus for your support i really appreciate it cause i know you understand sorta being in the same position.Its not the same when it comes from someone that hasnt been there IYKWIM.

[will&samsmum]

Hi Jaclyn,

I'm sorry to hear of the troubling times you have been having with your DD lately. It must be very scary for you. My DS has a rare brain condition and one of the outcomes of that condition is that he has complex epilepsy. I totally agree with your Doctor to have her fully checked out for epilepsy. I would ask not only for an EEg but a MRI as well. Williams condition only showed up in the MRI. The scariest part I found was not knowing what was wrong.......it was a relief when he was actually diagnosed with his condition because we had a name and we could gather heaps of information and know just how to tackle this thing. I'm not going to lie to you epilepsy is not fun but it can be controlled with medication. William has all sorts of seizures.......some vacant staring others have twitching attached and sometimes he also seems to stop breathing and goes blue........we have a medication called Midazolam that we put up his nose when he is having a seizure and it brings him out of it within 5 minutes. It is very confusing.......I know at first each Doctor had a different scenario on what was actually wrong......it made my head spin because just when I thought it was something it turned out to be something else. We are so very lucky as we go to the Royal Brisbane Childrens Hospital and we have the most wonderful Neurologist wo has been the light at the end of our tunnel. I am sorry you are so upset and stressed out........nothing anyone can say or do will change that until you know exactly what is going on. A really positive thing is that her obs stayed normal throughout her ordeal. I jus read in your other thread that you had a panic attack and really freaked out. Can I just tell you that this is totally normal......I experienced the same thing over and over again and it only now after witnessing hundreds of seizures that we are not hysterical and run around panicing. It is so part of our routine that now we just go into automatic pilot and do what we have to do.......mind you I still cry a million tears after each episode but I am more in control when it is actually happening. I hope you and your family stay as strong as you possibly can throughout this ordeal. You will be in our prayers every night. Anytime you want to talk I am hear for you. I hope I have helped a little. I'm sending you a big cuddle :hugs: and also one to your little girl. I know what we have face with William has made us stronger and more tolerant people and it sounds unusual to say but I wouldn't change anything because that means I would change William. Special children are given to special mothers and I have a feeling that you fall under that catagory. Take care of you........that is so important because you may just have to be stronger than you ever thought you would have to be. Our warmest thought are with you.

Talk soon.

Love
Emma :hugs:

[MamaRabbit]

I just sent you an email - we had a similar experience. Hope it helps and you manage to find some answers. My thoughts are with you in the meantime.

Hi to everyone else on here also.....things have been quiet, does that mean all the little ones are thriving. I do hope so. Charlie has been seizure free for over 12 months now. We see the neuro in a week or two to discuss coming off the meds.....Yippeeeeee!

Talk soon,

[pegasus]

Just a quick note to Emma and Elle - :fingerscrossed: good to hear that things are looking good for both of you and your little ones.

How good are you both feeling. Emma - I hope your pregnancy is doing well and you haven't been getting too morning sick. Elle - good luck with getting Charlie off the meds.

Happy dances to all.:smiliedance:

[♥Heaven Sent♥]

Thanks to all who sent messages of support i really appreciate it:hugs: :kiss:

[will&samsmum]

Hi Veronica..........

Hope you and your family are well. We are doing really well at the moment. I am currently weaning William off his Dilantin and all is going good so far.......TOUCH WOOD!!!:fingerscrossed: He is doing really well at Physio....they have started hi on the parallel bars and he is doing as good as can be expected.......he is just getting stronger each day off coming off all the meds. My pregnancy is going good we had a scan the other day and our new baby is progressing along wonderfully and.........IT'S A BOY!!!!! I'm thrilled....we are going to call him Samuel...a litlle brother for William is just wonderful. We had the test for Down Syndrome and Spina Bifida and all results were good....I am 15 weeks along now. William had a seizure about a week ago but it was just a little one and all is good. How is your pregnacy going????? Not long until July now!!! Anyway, thanks for your thoughts and warm wishes........big cuddle to you and your family :hugs:

Elle.........good news that little Charlie might be coming off the meds!!! Good luck and let us now how it all goes. Big cuddles to you all :hugs:

Talk soon
Love
Emma :hugs:

[suemp]

hi your stories are gorgeous, i wish you all well. i noticed alot of talk about testing and as an adult with epilepsy ill tell you the little i know. i had a mri which shows brain abdormalities and it did not show up my ep. i had a eeg it did not show up ep then i had a sleep induced eeg which they use in adults, apparently if you have ep it will show it (which it did)unfortunately it is almost impossible to do with children as i had to be awake from 8 in the morning to 8 the next morning with no sleep in between very hard for an adult.let alone a child.
and mris are not nice . alot of ep sufferers seizures are often bought on by lights, surroundings etc and for me also enclosed spaces. i thought id be brave and say no to being knocked out but not next time. so dont feel bad if you have to sedate your child, esp if they do have ep as its probably kinder.
good luck to all. my son has febral convulsions so i know the sight of seeing your child go blue and convulse. im just lucky he will grow out of it.
prayers to you all ,sue

[suemp]

:p by the way i am happy to explain what it feels like when your having a seizure if youd like
sue

[♥Heaven Sent♥]

Hello all,
I just wanted to ask a question my daughter seems to do this blacking out when she is overtired or stressed do you's know what sets your babies off and have a fit?

I also have made an appointment with my family doctor to get a referal for a paed :fingerscrossed: wish me luck that i get somewhere.

[will&samsmum]

Hi Jaclyn,

Many things can trigger Williams seizures.......being tired is definetly one of them. He always has a seizure if he is sick. Heat brings on seizures in him sometimes....we live in Brisbane so we have his room fully air conditioned. A teperature anywhere over 37 brings on seizures in William. Teething brings on seizures....for every tooth that has come through we have had a couple of days of seizures.......most usually resulted in hospital stays. Being stressed or upset can bring on seizures. And sometimes he just has one with with no apparant cause. They have told me also that being hungry can trigger seizures as well.

Good luck with the Doctors.......remember sometimes you need to be a little bit forceful to get things done. At first they all made me feel like they had all the control and all the say in what happens but thats not true......the parents have all the control and legal say in what happens so demand if you have to.

Take care of you and big cuddles to your little girl. :hugs:

Talk soon.
Emma

[anthony26yo]

Hey guys,

Just letting you know. Leila is still having seizures and no medication is worked to eliminate them totally. They are going to try steriods and then if that doesn't work they might have to look at surgery.

Apparantly there are only 20 cases in Aus of babies where meds have not worked.

Please pray for us.

Anthony

[will&samsmum]

Hi Anthony,

So sorry to hear that Leila is still having seizures and no meds are fully stopping them. I know how you are feeling.......William is on Dilantin, Phenobarbitone & Topomax twice daily and he still has seizures...........we are weaning him off Dilantin and Phenobarbitone and just leaving him on Topomax.....he was also on Clonazapan and we weaned him off that as well. I really feel that whether William was on medication or no medication that it would be exactly the same. They have tried other drugs with him as well but nothing has stopped the seizures totally. William is now 23 months old and has been having seizures since 10 weeks of age. They have not tried steroids with William.....I must ask them why and unfortunately his condition that causes epilepsy.....Periventricular Nodular Heterotopia........there is no surgery to fix this. What condition does Leila have that causes epilepsy????? No one has ever tol me about there being only 20cases that meds don't work in epilepsy........William must fall in that number as well. You are in our thoughts and prayers every day.

Big cuddles to your family and an extra big cuddle to beautiful little Leila. :hugs:

Take care of you.
Keep us informed.

Emma :hugs:

[♥Heaven Sent♥]

Hey Emma,
Serena has been teething so much lately her front 2 just came through now the ones next to them are coming through and so are the bottom next to the front so she has 4 coming through all at once:( poor bub.I gave her neurofen for it today i think twice as she was very grizzly.We have just been trying hard to prevent whatever it is that happens.

We have been having a strict routine that when we notice she is tired which is usually the same time every day she lays down with a bottle and relaxes and goes to sleep.

I praise her for good behavior and ignore her bad behavior and when she hurts her self we distract her onto something else.

So far its working but i cant always guarantee its gonna work.:ecomcity:

hehe well 2 days till the doctors will let you all know what happens
:hugs: to all Jaclyn

[will&samsmum]

Hi All,

Feeling a little down today :( . We went to Moreton Island for the weekend to celebrate my brothers 30th birthday and I was very nervous about the whole thing....there is no ambulance or hospital there and I was worried that William would have a seizure........well he did today......we had just got on the barge for our 2hour long journey home and we were 10 minutes into the journey when William had a big seizure and turned blue......I had to put Midazolam up his nose and after about 5 minutes he came out of it.....I really paniced because how in the hell were we going to get help in the middle of Moreton Bay on a barge????? After he came out of it he had a really big sleep and woke up just fine. It was a really freaky experience that has really shaken me up. We got home about an hour ago and he has just had another seizure and I had to put more Midazolam up his nose.....he has come out of it fine and is drinking his bottle now.....he seems to be a bit hot so maybe he has a sickness brewing. I am a bit sad and have just had a big cry:crying: .

Sorry to be such a downer today.

Talk soon.
Emma:(

[♥Heaven Sent♥]

Hi Emma,
Sorry to hear that William had another 2 seizures:hugs: and:kiss: to you hope you are feeling a bit better.

I went to the doctors today and got a referal for a specialist for Serena so i hope i can get some tests done my doctor said shes really nice and does a good job.

Thats all from me at the moment hope everyone are ok:thumbsup:

[MamaRabbit]

Hi Emma, I'm sorry to hear about Williams seizures. I don't blame you for feeling a little panic on the barge. Just as well he is back home surrounded with the things he loves. He has been doing so well lately, try to keep that in mind when you get down. I was feeling a little flat last week, not really sure why, mainly Charlie's development and what a long process it seems to be, people are starting to talk to us about having a child with special needs, which I find so odd because Charlie is so happy, healthy and and adorable, he is just working harder at reaching his milestones. He's doing great, so happy and getting stronger each day, yet for some reason I was still down about it. I put it down to pregnancy hormones and managed to pull myself out of it. Only 5 weeks to go now, can you believe it! Anyway, we are back on track with weekly physio and I have a renewed positivity after shedding a tear or two.

Hi Anthony, I'm so sorry to hear about Leila. It can't be an easy time for you, Leila and your family. Like Emma says, be sure to ask as many questions as you can and demand if you have to. You never know what options may open up to you the more you question your/Leila's options. I know a few people who have had surgery for Epilepsy related situations, it sounds terrifying but they seem to have recovered well. Good luck with the steroids and keep us updated on her progress. Our thoughts are with you :)

Hi Jac, good luck with the doctor. Since being on medication Charlie hasn't had a single seizure for well over a year, he has come through quite high fevers, illnesses, teething, tiredness etc and it hasn't been enough to cause any further seizures. Whether it is just the medication or perhaps his little brain is isolating the cause of the seizures - no one really knows. When we had our EEG, they asked for Charlie to be a little sleep deprived, as much as could be expected from a little baby. I think he needed to be awake for at least 2 hours before the test so then there was a chance he would fall asleep with a bottle, which he did.

Now a bit about us, we see the neuro today for the first time in 6 months. Hopefully we can get Charlie off the medication as I would love to see what effect that has on his strength and development. They say Topirimate can make you lack strength and lose your appetite etc. Physio is going really well, we started with an early intervention program called Lifestart a couple of months ago, we have access to physio, OT and Speech all at once. We have been doing one on one sessions and home visits and next term will start with small groups of about 4 children - the interaction should be great for Charlie. He has made more progress with them since February than he did via the hospital services in 7 or 8 months. They are positive about what the next 6-12 months will bring. Fingers crossed the neuro visit goes well this morning.

Anyway, hugs to all, we think about you often. Keep smiling :)

[will&samsmum]

Hi Jacyln,

Thanks for your kind words and support. Good luck with the Specialist and let us know what happens. Hope Serena is OK. William is OK...he ahd another small seizure last night but no Midazolam was needed. He is all good now. Big cuddles to you and Serena :hugs: Talk soon.:)


Hi Elle,

Thank you for your constant support.......means so much to me....I sent you an email. Big cuddle to you and Charlie :hugs:


Thanks to everyone for your support.

Take Care
Emma :)

[will&samsmum]

Hi All,

Just wanted everyone to know that today is Williams first day with no Dilantin!!!!
Yeh....cross your fingers & toes for us that all goes well:fingerscrossed:

Hope all is well in everyone elses life.

Take Care
Emma:D

[♥Heaven Sent♥]

Hey Emma
Just a quite note we have our fingers:fingerscrossed: for William that he goes well without Dialantin.
Love Jac:hugs:

[pegasus]

Hi Emma

Just to let you know that I'm thinking of you and William. Sorry I hadn't posted to let you know that I read about William's last seizure and I'm glad he seems to be getting better.

Good luck with going without Dilantin. :fingerscrossed: Everything crossed for you...

:hugs: and lots of good thoughts and wishes going out to you and your family.

Veronica xx

[will&samsmum]

Hi All,

Just wanted to let everyone know that William saw his Neurologist yesterday and he was very happy with Williams progress. :D He has given us the go ahead to start weaning William off the Phenobarbitone....YAY!!! :smiliedance: We do have to increase the Topomax dosage while we wean him off the Phenobarbitone but that's OK by us as we would rather him on a higher dosage of just one drug rather than the original 5 drugs he was on at once. The Neurologist is so happy with his progress he doesn't want to see us for a whole 6 months!!!! We can't believe it....we usually see him every 2 - 3 months so this is a big step for us.......a little scary too. So far the weaning him off the Dilantin is all going to plan......TOUCH WOOD! Thank you to Jaclyn and Veronica for their kind words and thoughts. Talk soon.

Emma :hugs:

[MamaRabbit]

WONDERFUL WONDERFUL NEWS EMMA. Our fingers and toes will be crossed for William having a smooth transition onto just the Topomax. Keep us posted on his progress.

E x

[will&samsmum]

Hi Everyone, :wave:

Just wanted you allto know that William is going great being weaned off his meds. All is going to plan....TOUCH WOOD. Hope all your little ones are going well.

Talk soon.
Emma :D

[blayzesmum]

Hello everyone,
My heart goes out to you all, all of you are very brave and strong women, i hope all your children are well.
Ive actually got a question about convulsions. Im not sure if this is the right place to ask but anyways... My son 17.5 months has been sick for the last 4 days a virus, high temp,runny nose, vomiting etc. I have been taking him to the docs daily at the docs request to keep an eye on him. We couldnt bring the temp down and had to use suppositries (Argh). We where worried he might convulse due to high fever over 39. Anyways this morning his temp was 37 ish and he was looking fine and better but this afternoon when out shopping his eyes did a really funny thing looked really distant then cross eyed, where one eye is looking side ways one at us. He looked dizzy like he was going to pass out or vomit, he did neither of these things. My partner and i freaked out thought he was going to convulse, thought we had to take him to the docs again. Mean while his temp was normal around 37, he did the funny eye thing a few more times after that but still fine temp. My mum is a ex rn and said maybe he was about to convulse?? I dont know.
Anyways my question is did any of you notice funny eye movements b4 seizures or convulsions?? Should i worry, what do u think it is?? What tell tale signs do you get before the seizure begins?
:confused:

[♥Heaven Sent♥]

Hi Blazes mum,
Sorry i cant give you any advice about what this might of been but i just want to let you know im thinking of you and :fingerscrossed: nothing happens.Im sure one of theses lovely ladies will pop their heads in and give you some much needed advice
:hugs: Jaclyn

[pegasus]

Hi Blayzesmum - first of all, the doctors always said to us that if our child hadn't had a convulsion by the time his temp was high (38/39) then he was unlikely to convulse as a true febrile convulsion is due to the rapid rate in the rise in temperature rather than the high temp. However, having said that, due to the fact that my son has had afrebrile convulsions, we decided that this might not always be the case. It seemed to be a way that the doctors would explain that Aiden's temperature wasn't high when I took it straight after a seizure.

As for the eyes - quite possibly. I still remember very vividly how his first convulsion happened - I'd just fed him and sat him down, my hubby was watching him as I was about to step into the shower - he said to me that Aiden was looking drunk (ie he went floppy and his eyes rolled), then he started convulsing. Anytime I've noticed his eyes roll then yes, he has had a convulsion.

The danger is that the eye rolling in your child may or may not be attributable to a type of convulsion. My son was very sick last October (was about 17.5months) where he'd had a fever for 3days straight, I could keep it down with panadol and nurofen, but hated that I was doing this around the clock. We took him to the hospital on day 4 where they couldn't find anything (tested urine and all obs), we then took him to the children's hospital on day 5 where they did the same tests which all came back negative. We went in at 7.30pm, but they took blood tests at 11.00pm which showed he had something going on with him as his white blood cell count was all over the place and he was admitted to the ward at 4.00am (results came in at 2.00am). My point is, don't toy with this stuff - my son ended up in Princess Margaret Hospital for Children for 3nights but it wasn't until he'd been there a couple of days and they'd taken chest x-rays that they realised he had a bacterial pneumonia. During that time, his body was not coping well with the fevers, but he never had a convulsion.

Is the doctor you're seeing a paediatrician? I'd be strongly suggesting that they check bloods - it might be very likely that the eye rolling is due to your son's body not being able to cope with his virus. If he was going to have a convulsion, then it's likely he would have done (whether an absent one or a grand mal one), I've been told by many doctors that once they start, they can't be stopped due to a threshold being crossed. My son has a low threshold to seizures.

Hope that makes sense.


To Emma:wave:

Fantastic that William is going well. I was thinking of you the other day and here you are telling us that William's meds are decreasing:smiliedance:

How's his sitting and things going?

Bet he's growing up really fast without some of those meds!

:hugs: to all

Veronica xxx

[♥Heaven Sent♥]

Hi all,
Just thought id pop in and say that Serena is doing very well she hasnt passed out in 6 weeks nor have i noticed anything weird:smiliedance: .Im so happy that it hasnt happend i hope this will be permanent.She had had a few hard falls and lost her temper lots of times but she remembers to breathe:thumbsup: .

To Emma glad to know that William is doing well with his meds :fingerscrossed: for you that it all goes to plan.

[will&samsmum]

Hi All,

To Blayzesmum........When William has a seizure his eyes get a very far away look in them and then go up to the right side and twitch. He is not there at all and his eyes do not focus on anything. I wouldn't say that he looks drunk or dizzy at all but totally absent. Before William has a seizure his eyes do go funny - sort of crossed and look out of the sides and it is like he has no control over the movement of them. If his temperature goes over 37 at all he has a seizure. William is always a bit unco-ordinated before a seizure to but mind you sometimes there are no signs he just has one. I think for your own peace of mind that you should definetly see your dictor for more tests. Good luck with it all and anytime you need to talk we are all here for you. Big cuddles to you and your little boy and thank you for your warm wishes for my little boy. :hugs:

To Pegasus...........William is getting stronger and stronger as the meds decrease. I can't believe how much he is changing without being drugged out all the time. He is sitting really well all by himself and has started babbling so much it sometimes drives us nuts!!!! But a wonderful nuts!!! He has just started saying mum!!! :D Makes me so happy every time he says it. He is still going to Physio, OT & Speech every week and they are incredibly happy with his progress. As the meds decrease so is the Nystagmus in his eyes and it is hardly there at all anymore....we saw the eye specialist last week and she could even see the Nystagmus anymore. It is all good news. He did have a seizure a couple of days ago and for the first time in over a month we had to give him Midazolam up the nose but thats OK......the Midazolam wrecked him.....I didn't realise how much because before he was on all the other meds and it didn't effect his as much but he slept for hours afterwards this time. His seizures seem to be getting longer in between seizures and he is on less medication than he has ever been on....go figure????? Hope your beautiful little boy is doing well........not much longer until your new bubby arrives....how exciting!!!! I am half way there now....had our 20 week ultrasound and all is good....TOUCH WOOD!! Anyway take care of you and big cuddles to you and your family. :hugs: Talk soon.

To Jaclyn.............thanks for your kind words and I am so thrilled for you that your beautiful little girl is going so well. Have you had the appointement with the doctor yet??? If so what do they reacon???? Talk soon. Big cuddles to you and your family

To Elle............Wow....only 6 days to go till your due date....hope all is going well and good luck with everything. Let us know how things go and if it's a boy or a girl!! Thanks for your kind words. Big cuddle to you and little Charlie.

Love and best wishes to all.
Emma :kiss:

[♥Heaven Sent♥]

HI emma,
I went to the doctor and spoke to him about it and said it would be best to see a paed and get some tests he gave me a referal but i havnt taken her there yet because i havnt had a need too.I will definately be taking her there if anything else happens but :fingerscrossed: it dosnt.

[pegasus]

Wow Emma - how great is all this?

Just wanted to post my support for all that's been going on for you and William. With the nystagmus going - that's another neurological sign that's showing his brain is happy it's getting less medication!!! Sorry to hear that there have been some instances of some seizures, but glad to hear they are further apart.

As for us, it was Aiden's 2nd birthday today and his party tomorrow and he hasn't had a seizure for about 4 months:yelclap: Only 2 1/2 months to go for us - Don't think it's really sunk in (but from all doctor reports it's a girl!!!) Starting to get excited, but still going through it all, one day at a time.

Love to all,

Veronica xxx

[blayzesmum]

Hello, thankyou everyone who replied to my question :)
Its pretty scary the thought of your baby having a convulsion, god knows what you have all been through....Blayze is still sick, though he has a small temp and runny nose now, no funny eye things have happened since i posted here. If it happens again i will definately seek medical help/advice. Its just good to know if i need help with anything i can ask here, what a great site, but most of all what lovely ladies, and men too, taking the time to share their stories and advice, which feels alot better than ringing up the doctor evry two seconds, because you have all experienced it.
Hope all your chidren are well and thanks again i will keep you posted :wave:

[MamaRabbit]

To blayzesmum: my Charlie hasn't had a seizure for around 14 months. We caught them really quickly over a 3 day period. He started off doing a staring thing, I used to say he was "zoning out" for 10-15 seconds or so. The next day he zoned out and looked up toward the ceiling. The day after his limbs were a little stiff. He didn't convulse as such but he certainly zoned out, I never noticed his eyes crossing over or looking in difference directions, it was more that he just tuned out and didn't respond when I spoke or looked at him. Thankfully the right doctors witnessed it at the right time which fast tracked all our testing. He generally got a little irritable immediately before a seizure, would squirm and grizzle a bit. The seizures only lasted around 20 seconds but he was then quite lethargic and sleepy afterward. He has been through teething, fevers, rashs, colds etc and never had a seizure since so he seems to be well controlled for now. Good luck with it all and go with your gut instinct. If something happens and you have any doubts just get it checked out even if people tell you it is common, sometimes it is worth persisting just to make sure for yourself.

To Jaclyn: pleased to hear all is going well in your corner of the world. Fingers crossed this is the last of Serena's problems....do keep in touch though!

To Pegasus: Congrats on the baby front. I didn't realise so many of us are expecting. Happy birthday to Aiden!

To Emma: What can I say, other than wonderful news about William. He seems to be going from strength to strength. It's nice to hear about such positive things happening in your lives. Thanks for your well wishes too, it means alot to us.

As for us - new baby is due on Wednesday.....I was 3 days late with Charlie so lets see what happens this time around, we were home the next day so fingers crossed things are just as smooth this time around. Charlie is doing great. Development is still a long slow process but gains are being made each week which is just lovely to see. He remains adorable, happy and healthy so what more could one ask for? We start a music program this week (I will probably miss a week or two with the birth), it is called sing and grow and has received quite good feedback. Will let you know how it goes.

Talk soon and take care everyone.

[LilSqz]

Hi Everyone,

Firstly, I just wanted to thank you all for sharing your experiences. My beautiful little angel was just discharged from hospital yesterday (after a five day stay) with a probable diagnosis of epilepsy. My husband and I are just trying to come to terms with it and so it was so nice to read your posts and know that we are not alone out there. Thank you all so much. I even showed my husband some of the posts as we were feeling so overwhelmed.

Our little angel Charlotte (14 wks at the time) had her first convulsion last Friday and it was one of the scariest experiences of my life. She had just finished a feed and so we were playing, when all of a sudden her eyes rolled up and to the right, started flickering and her whole body started twitching. It took me a few seconds to process what was happening - my god this was a seizure. Unfortunately things escalated quite quickly and she was to go on to have another 11 episodes that night. On the upside though, we were lucky to have had her checked out by great paeds straight away. At first they thought it was infantile spasms, which are apparently really common and not too serious. But then they realised that they were focal seizures when it became only her face that twitched. It was a full on night as by 1am she had been put on dilanten + midazalam, had a ct scan and a lumber puncture (spinal tap) and we had been transferred from one hospital to another to be in the HDU of their paed ward. She was also placed on oxygen to stop her sats from dropping too low. We are just really lucky that we had such great care so quickly and that they took it so seriously.

Slowly she stabilised on the drugs over the weekend and so we were allowed to go home on a twice daily dose of dilanten + tegretol. the ct scan came back normal as did the lumber puncture. she had an eeg which is also normal. we have the mri booked in and hopefully that will show what is happening inside her little headball.

we are so lucky though that she is responding to the drugs. my sil also had infantile epilepsy so all the doctors are interested in the potential familial link. also means that hubby has had experience with seizures and all this medication. (also we know that kids on tegetrol etc still grow up to lead normal healthy lives!):smiliedance:

things happened so quickly that my dh and i are still reeling a bit and trying to take it all in. so reading your posts helped me work through a few things in my own head. in between the seizures she is so normal and playful that it is difficult to connect this child with the one who only a couple days ago was connected up to drips and monitors.:(

nonetheless she will always be our beautiful little angel and apart from the seizures she is thriving so we really cant ask for anymore.

Emma, it was so nice to hear William's progress through the thread. he is such a brave little tiger (and so are you and your fiance!)
Anthony, I hope Leila is responding to the steriods, if they do have to go done the surgery track our thoughts are with you.
Jaclyn, so exciting the final stages of pregnancy - all the best with that. And great news that Serena seems to be doing okay, fingers crossed that you don't need to go to a specialist
Elle, absolutely great news about Charlie being seizure free, here's to getting him off the meds.
Pegasus, all the best with your pregnancy (too!!) and also fantastic news that your little one has been seizure free for four months.

lizx

[♥Heaven Sent♥]

Hi Everyone,

Firstly, I just wanted to thank you all for sharing your experiences. My beautiful little angel was just discharged from hospital yesterday (after a five day stay) with a probable diagnosis of epilepsy. My husband and I are just trying to come to terms with it and so it was so nice to read your posts and know that we are not alone out there. Thank you all so much. I even showed my husband some of the posts as we were feeling so overwhelmed.

Our little angel Charlotte (14 wks at the time) had her first convulsion last Friday and it was one of the scariest experiences of my life. She had just finished a feed and so we were playing, when all of a sudden her eyes rolled up and to the right, started flickering and her whole body started twitching. It took me a few seconds to process what was happening - my god this was a seizure. Unfortunately things escalated quite quickly and she was to go on to have another 11 episodes that night. On the upside though, we were lucky to have had her checked out by great paeds straight away. At first they thought it was infantile spasms, which are apparently really common and not too serious. But then they realised that they were focal seizures when it became only her face that twitched. It was a full on night as by 1am she had been put on dilanten + midazalam, had a ct scan and a lumber puncture (spinal tap) and we had been transferred from one hospital to another to be in the HDU of their paed ward. She was also placed on oxygen to stop her sats from dropping too low. We are just really lucky that we had such great care so quickly and that they took it so seriously.

Slowly she stabilised on the drugs over the weekend and so we were allowed to go home on a twice daily dose of dilanten + tegretol. the ct scan came back normal as did the lumber puncture. she had an eeg which is also normal. we have the mri booked in and hopefully that will show what is happening inside her little headball.

we are so lucky though that she is responding to the drugs. my sil also had infantile epilepsy so all the doctors are interested in the potential familial link. also means that hubby has had experience with seizures and all this medication. (also we know that kids on tegetrol etc still grow up to lead normal healthy lives!)

things happened so quickly that my dh and i are still reeling a bit and trying to take it all in. so reading your posts helped me work through a few things in my own head. in between the seizures she is so normal and playful that it is difficult to connect this child with the one who only a couple days ago was connected up to drips and monitors.

nonetheless she will always be our beautiful little angel and apart from the seizures she is thriving so we really cant ask for anymore.

Emma, it was so nice to hear William's progress through the thread. he is such a brave little tiger (and so are you and your fiance!)
Anthony, I hope Leila is responding to the steriods, if they do have to go done the surgery track our thoughts are with you.
Jaclyn, so exciting the final stages of pregnancy - all the best with that. And great news that Serena seems to be doing okay, fingers crossed that you don't need to go to a specialist
Elle, absolutely great news about Charlie being seizure free, here's to getting him off the meds.
Pegasus, all the best with your pregnancy (too!!) and also fantastic news that your little one has been seizure free for four months.

lizx
Hi liz,
Thanks for sharing your story it brought tears to my eyes and to think that such an innocent little person had to go through this :hugs: .Its good to hear that she is doing well on the meds now and :fingerscrossed: she continues to have good progress.My thought are with you and your family as you go through this tough time and know that if u ever need to chat just pm me or one of the other lovely ladies they gave me great support:) .Thankyou for your wishes with my pregnancy and Serena everything is going great and am loving this last bit of pregnancy.

Hope every one elses littlies are doing good
:hugs: Jaclyn

[will&samsmum]

Hi All,

To Liz.........my heart broke when I read your story. I really feel for you and your husband. It brought back alot of memories for me as William was just 10 weeks old when he had his first seizure. I have sent you a PM. Big cuddles to you, your husband and your beautiful little girl. Talk soon. :hugs:

To Veronica.....I hope Aiden had a wonderful birthday and is doing well. William is 2 in 12 days and we are also having a big party for him. Thanks for your words of support for William. How wonderful that Aiden hasn't had a seizure for about 4 months. I hope it continues that way for you all.:fingerscrossed: And how absolutely wonderful that you are having a little girl....got any names picked out yet???? We are having a boy and calling him Samuel. I have been a bit down these last few weeks......pregnancy hormones I think. I keep reliving all of Williams experiences from the first seizure right through over and over in my head. Just can't shake it. My Doctor thinks it is my sub concience working over time because I am scared it will happen to the new baby so he has sent me for a very thorough Ultra Sound and they fully checked out the little fellows brain and ventricles and all looks perfect so far...TOUCH WOOD. Realistically there is nothing anyone could do if it wasn't but it has set my mind at ease a bit more......as I said just pregnancy hormones I think. Anyway enough about that. Hope you and your beautiful boy are well. Big cuddle to you all. Take care. Talk soon. :hugs:

To Elle......Charlies progress sounds great and that music program sounds very interesting. Can you tell me more about that??? So have you had the new Bub yet???? Eagerly awaiting some news about it. Big cuddles to Charlie (and new bub). Talk soon.

Jaclyn.......good to hear Serena is doing so well and you haven't had anymore episodes. Good luck with the final stages of your pregnancy.......I wish I was in the final stages but I have 17 long weeks to go. Take care.

Take care and talk soon.

Luv
Emma :hugs:

[MamaRabbit]

Hi everyone,

After a long 9 months I'd like to introduce Charlie's little sister - Sophie Grace, born 9 May 2006. What a wonderful feeling! To all you other expectant mums, I hope you all are having a smooth pregnancy, the prize at the end is just amazing.

Liz - I can relate to so much of your story, in particular how you are your DH must be feeling. It took us awhile to get things right in our head and understand exactly what was going on but over time and having met and spoken with some wonderful people we began to realise that things weren't so bad. Charlie is growing to be a happy, healthy, adorable little boy with such a lovely nature. Life became a little more challenging in the way of development and having to attend physio etc but the daily fear of another seizure disappears. Feel free to email me anytime if you want to chat.

Emma - we haven't managed to attend the music program as yet with the arrival of Sophie. I'm hoping to make it this Friday if I can manage getting out and about with the pair of them. It is called Sing and Grow and runs for the school term. I believe it is a standard program offered but the one we are attending has been booked for Lifestart so it is specifically for children with delays. I've heard good things about it so I will keep you posted once we attend a session. Charlie loves music, singing and dancing so I'm sure he will have a blast here.

Lastly for anyone interested I just purchased a book via Amazon.com called "Seizures and Epilepsy in Childhood, A Guide" Third Edition (latest release). I haven't managed to read it as yet but it seems to cover most parent concerns as well as providing a detailed medical description, whilst providing a positive and compassionate outlook for the future. It has received great reviews from parents. Just thought I would share it with you.

Take care everyone.

[pegasus]

Firstly - to Elle - Welcome to Sophie!!!!!

How great it is how many of us are bringing another little prince or princess into the world.

Welcome to Liz - we hope that by sharing it can decrease some of the worries for you.

To Emma - Each time I see you've posted I love hearing how William is doing better with the decreased medications. Also great to hear that Samuel is doing well (isn't it weird calling them by their names before they've been born?). We've sort of got a name, but I can't bring myself to talk to her calling her that incase we change it (or my doctor got the sex wrong!). hey - also enjoy William's birthday - we enjoyed Aiden's birthday (probably more than him).

To Jaclyn - glad to hear that Serena hasn't had anymore episodes - it's so scary, I think we'll be on hyper alert for the first year after our new bub joins us.

Cheers,

Veronica

[Illusional]

*pokes head in*
Just a question for you girls who might know..

My son had tonic clonic seizures at birth up until 3 months and was treated with Phenobarbitone (that part I get), but what Im in the dark about is a birth mark that he has under his chin called a 'linear naevis'.
His Paediatrician said that these are quite common, and appear in approx 80% of children who show signs of developmental delay.. (and that it was in some way possibly linked to whatever caused the seizures in the first place)
Just wondering if anyone can shed any light on the truth in this and if so, what developmental problems are most common/likely?

My son doesnt show any at all, besides his selective hearing lol, and short attention span (Not ADD).

[will&samsmum]

Hi Illusional,

I'm sorry I can't be of help on this one as I have never heard of it before. Have you searched the Internet for information???? Maybe you could ask your Paediatrician for a site that you could research it on. It is wonderful that he no longer has seizures and that he is not showing any signs of developmental delay. Good luck on your quest for information and sorry I couldn't be of any help......just curiously did he ever have an MRI to see why he had seizures?????

Take Care
Emma :)

[pegasus]

Hi Illusional

I couldn't find any reference in my medical dictionary, but I've lent out one of my references for neurological conditions which I'll see if I can find some more info for you.

In the meantime here is something I have found...

LNSS - Linear Nevus Sebaceous Syndrome (http://www.med.wayne.edu/dermatology/MichDerm%20Online%202002/24LINEAR%20NEVUS%20SEBACEOUS%20SYNDROME.htm)
Funny thing is this syndrome seems to link to mental retardation (which could be seen as developmental delay, but otherwise eye problems.

I'd be asking for a head CT or MRI so that if there is something going on then it can be confirmed, you just don't seem to be reporting any of the symptoms which are described with this...

Goodluck

Veronica

[Illusional]

Hi Girls thanks for your responses..

He never had an MRI I think it was because he had a range of other tests that all showed up negative so they didn't feel the need to do one.

He hasnt had any problems since two months old so theres no need to do any further tests. They believe that his seizures were caused by lack of oxygen during labour, because the cord was compressed - hence why they ran the other tests to ascertain whether he had sustained any brain damage from it.

Thanks for that link Veronica.. even though he doesnt suffer from that syndrome - it did make reference to the linear nevus that he has on his chin, so i did a search on the full name and found that it isnt proven to be linked to anything of interest.. the only thing is that 10% of them can turn malignant at an older age - which I now remember my doctor saying anyways.

Thanks for your help

Shannon

[LilSqz]

Hi All,

Thanks so much for the kind thoughts and messages. Am feeling much better about things. Charlotte is doing really well on the meds (no seizures yet!! touch wood this continues). She has been alot more sleepy though, but I am not going to complain!

We had the MRI on Wed, it was scary when they put her under the general, but i just kept remembering that it is a means to an end and we do have really great thorough care.

Emma, happy belated birthday to William! Give him a big birthday hug from me and Charlotte. It is so nice to hear his updates.

Elle, I think I will order that book, I have been devouring anything with any info on epilepsy at the moment!! Congrats again on little Sophie :smiliedance:

Veronica, hope everything is going well with your little one to be as well. Hope Aidan had a wonderful little birthday.

So many expectant mummies. DH and I were thinking of waiting a bit before thinking about the next, but I do think I might be getting clucky again (is that possible with a four month yr old!) :D

[will&samsmum]

Hi Liz,

Great to hear all is going well for little Charlotte. Let us know the results of the MRI when you get them. Thanks for your birthday wish....I can't believe my baby is 2 already. Big cuddles to Charlotte. Talk soon.

To All :wave:

Just wanted to let you all know how great William is doing. He hasn't had a seizure since the 27th April.....we have got past the 3 weeks!!! Yay!! This is the longest we have gone without having a seizure for a very long time.....TOUCH WOOD!!!!! Since weaning him off half of the Phenobarbitone dose he is so more focused. He looks at everyone and focus' on all his toys and even plays with 2 toys at once. If he drops his bottle he goes after it....he is so much more alert...it is unbelievable. I am so happy I could cry (those darn pregnacy hormones!!!) he is still going strong at Physio and they too can't believe how focused and alert he is.....things are really starting to happen for us. :D He is saying Mum and really babbling all the time. Just wanted everyone to know how well he is.

Hope all is going just as well in your worlds and that your beautiful babies are doing good. Take care and talk soon.

Emma :)

[♥Heaven Sent♥]

Thats great Emma that William is really happy and hasnt had a seizure for a while.Good to know about the meds he seems to be doing really great without them meds.How is ur pregnancy going? Still feeling those pregnancy hormones?me too lol.Well i have only 7 more weeks to go if not less if they induce me early.Serena is doing really good even though we have all been sick for the last 2 weeks-last week was gastro and this week is a cold so :fingerscrossed: cross fingers nothing else comes our way.

Hope everyone else is feeling/doing good:hugs:
Jaclyn

[LilSqz]

Emma, that is such good news about William. So great that he is doing well of the meds + really nice to hear how alert he is, babbling away!:smiliedance:

Jaclyn, hope all is going well with the pregnancy (little Sasha). sorry to hear that your fam was sick, not fun

hope everyone else is going well (it is freeezing down here in canberra now!)
liz

[MumOfTwoBoys]

Our paediatrician is useless, he charges a fortune to tell me how lucky I am, what a miracle my daughter is, then weighs her, measures her head and says see you in 3 months.


Where do you live? I have a fantastic paediatrician in Melbourne.

[QTB]

hi everyone, my 7month old son has just been diognosed with epilepsy, we just spent a week in hospital due to him having fits. after an inconclusive EEG the dr said its most likly a result of meningitis (he had it at 6weeks old) over the past month hes had 5 whole body thrashing fits and hundreds of absent seizers (sp?) hes been put on meds (cant remember the name) just for if he has a fit over 5-6mins (so far they have all been 3-4mins. we are awaiting an MRI and Lumber Puncher.

im so freaked out!! i thought he may have been having febrile seziers but there is never a temp...

[will&samsmum]

Hi Mel,

I am so sorry that you and your family are experiencing seizures. My son started having seizures at 10 weks of age and after many tests (EEG's, blood tests, Lumber Punch & finally MRI) he was diagnosed with a rare brain condition called Periventricular Nodular Heterotopia. An outcome of this is Complex Epilepsy. He is now 2 and unfortunately even though he is on medication (currently Phenobarbitone & Topomax) he still experiences seizures. He is a healthy beautiful little boy with a beautiful happy nature. William has had every type of seizure and I am so sorry that your little boy has had the full thrashing seizures....they are the scariest ones. We also have a drug called Midazolam which we put up Williams nose if the seizure last longer than 5 minutes. We go the Royal Brisbane Childrens HospitaL and have a wonderful team of Doctors who treat William. Our Neurologist Dr Barry Appleton is considered one of the best in Australia and really has been the light at the end of our tunnel throughout the whole journey. What hospital are you in? I see you too live in Brisbane....we are on the Northside at Stafford. Maybe we could get together for coffee and a chat. I know how incredibly overwhelming and how alone this whole experience can make you feel. It will be good to have the MRI because epilepsy is nearly always an outcome of an underlying neurologicval condition so it will be good for you and your boys doctors to know why this is all happening. My email is lindberg@aapt.net.au and please feel free to contact me at any time. I know how freaked out you are feeling at the moment and I am sending you a gig hug :hugs: Please know that you are not alone. The ladies on this thread have given me such wonderful support and have often picked me up when I am feeling way down. William has seizures for so many reasons...sometimes a temperature, teething really sent him into many seizures and caused many a hospital stay, the Queensland heat sometimes did it (we now have his bedroom air conditioned), and sometimes just for no apparent reason at all. I became a member of Epilepsy Queensland and have found them also to be a great support...they send you information on Epilepsy that explains it all....you can ring and talk to them as well. Please don't try to get through this alone....you need a good support system around you. I know it feels like the end of the world at the moment but I assure you it isn't....you will find this amazing strength inside of you that you didn't even know was there and this will get you through. Epilepsy is controllable and once your life is adjusted to it everything will reach a "normal" again. It may take a little while but it will happen. Please contact me anytime. Our thoughts and prayers are with you and your family every day. Big cuddles to your beautiful little boy. Take care of you and willtalk soon.

Emma :hugs:

[QTB]

thank you Emma, reading what you wrote really did help. your right its not the end of the world and there is plenty of conditions that could be worse.

we definatly should meet up -that would be fantastic! iv not long moved here (march) from new zealand, so dont know anyone. we are currently going thru the mater childrens, Dr Burke and Dr Milik they have been fantastic so far.

the medication Brayden has been given is Midazolam as well. either up his nose or in his mouth. (which is easier?) im hoping we will never have to use it, but i doubt it...

if things get worse then he will be put on daily meds to prevent it. again, i hope it doesnt come to that.

thanks again, and i will email you shortly.

Mel

[will&samsmum]

Hi Mel :wave:

Great to hear back from you. Yes there are plenty of conditions that are worse but when seizures are happening to your little boy there doesn't seem anything else at that time could be more heartbreaking or unfair. I would love to meet up with you. It must be hard being in a new country and having this happen to you. I am very lucky as I have all of my family and friends around me and they have been a great support to me. Please email me and we will organise a meeting. I too am a stay at home mum and I can come to you or meet you anywhere at anytime....except for Wednesdays because that is when William has Physio, Occupational Therapy & Speech Therapy. I am pleased that you too have such good Doctors and are happy with the care you are being given. Our Neurologist also attends to the Mater Hospital. Don't be scared of Midazolam....it is a wonderful medicine for what it is supposed to do. It brings William out of his seizure within a couple of minutes and then he has a big sleep afterwards. I would recommend giving it up the nose as it seems to work quicker and also when they are having a seizure they cannot swallow so therefore he would not be able to swallow it......in fact alot of drool usually comes out of the mouth. Usually you will find that seizures run in clusters.....if they have one you will usually find they have a few in a couple of days...this is just the way it is so we were advised not to give William any solid foods for 24 hours after a seizure due to the fact he could bring the food back up when having a seizure and choke on it. We have also found with William that it helps to give him a dose of Panadol after he has a seizure because he is aggitated and seems to have a headache. I hope I have explained that so you understand.....its hard to put into words. Don't be worried if he has to go on a daily med routine as once again they are wondeful medicines for what they are supposed to do but you will cross that bridge when and if you have to. When is your MRI booked for??? Anyway, hope Brayden is doing well and I hope that you and hubby are coping OK. Always remember that I am here if you need me. Big cuddles to little Brayden and take care of you. Talk soon.

Emma :hugs:

[MamaRabbit]

Hi Mel,

Sorry to hear about Brayden, our thoughts and prayers are with you. It is emotionally tough coming to terms with a new diagnosis. So many ups and downs, what if's and endless amounts of research - some of which is great, the rest is useless and scares you silly for no reason. Just know that there will come a time when you make a few changes, like taking meds for example and you all find your groove to just start living life again. As terrifying as a seizure is, I have come to realise that epilepsy is by no means the end of the world. In fact since our Charlie started having his troubles at just 6 and a half weeks of age we have come across friends and children of friends who have epilepsy and we never knew before. They have gone on to do some wonderful things and lead really happy successful lives - just like anyone is capable of.

My Charlie hasn't had a seizure since his diagnosis around 15 months ago, even through fevers, teething, colds etc. In fact the poor little cherub has some sort of gastro virus with a fever for 3 days now, vomiting with no energy but still he is in good spirits with no sign of a seizure.

Unfortunately he has struggled in the development department, I put this down to his first lot of medication which didn't agree with him and it took a good 7 months to figure that out, wean him off and dose him up on a new drug...but it is nothing that alot of hard work and physio won't eventually fix. It is trying at times, physically frustrating for Charlie and emotionally for me but it is a small price to pay for making sure he is healthy in the future.

Keep your chin up and stay positive, you won't know what the future holds until it happens but I'm sure it won't be as grim and bleak as you first thought when you heard the diagnosis and saw your first seizure.

I'm sure you will make some great friends via this thread. Drop us a line anytime you want a chat.

Emma - WONDERFUL NEWS! Your little William is such a trooper. We look forward to his next update. We haven't been to the music session yet, it's all a bit hard with Sophie in tow now. But we have started a small group session at Physio/Ot/Speech with 3 other little children. Charlie was overwhelmed at first by the other children, getting distracted by watching them all the time, but settled after a while and really seems to enjoy it.

Liz - I hope you and your DH are feeling okay now after Charlotte's troubles. Is it still cold in Canberra...I'm feeling it in Sydney, had the gas heater on for ages now (with a double dooner on the bed!!). P.S) Charlie was only 6 months old when I fell pregnant with Sophie.....

Jac, Veronica, Emma - hope the pregnancies are treating you well :fingerscrossed:

[will&samsmum]

Hi All :wave:

Just wanted you all to know that last night was Williams 1st night since he was 10 weeks old that he did not have a dose of Phenobarbitone!!! YAY!! He did really well and all went according to plan.....mind you I spent most of the night awake staring at him so I am a bit tired. In 2 months we will stop the morning dose of Phenobarbitone and he will be finally off that drug totally. :smiliedance: Please keep your fingers and toes crossed for us that everything goes OK.

Hope you and all of your children are doing well.

Talk soon.
Emma ;)

P.S. Mel....hope all is going OK with little Brayden.

[♥Heaven Sent♥]

:wave: Emma thats great im glad he is doing good off the drug(sorry cant memba the name) my fingers and toes are:fingerscrossed: for you that he can come off it completly and be seizure free:hugs: hope you and your family are well.

As for me time is going very quick i have got 5weeks and 3 days left till im due so not long now Serena is still doing well and has not had anymore blackouts allthough sometimes i freak myself out and think shes having an absence seizure:confused: Can i just ask those of you who have seen one what do they look like?

Hope everyone is doing well bye bye

[pegasus]

Fantastic news about William, Emma:thumbsup:

Sounds like all is going pretty well with us pregnant ladies. I know one of my thoughts these days is how will we cope if number two has seizures as well. Two friends of my family had second children who ended up having more seizures than their first children. At the end of the day we will just cope with it if happens. There are too many what ifs in this life and I guess the best you can do is just to deal with stuff as it happens.

Mel - good luck with Brady's epilepsy just know that we are all here to listen when you need to talk.

Jaclyn - Aiden has never had an absent seizure (although I've wondered if that's how some of his grand mal ones started as he seemed to blank out before the rolling of his eyes and jerking etc). My MIL has told me that her other two sons (my hubby's two brothers) had what would seem to be absent seizures. She described them as basically going very quiet, and staring ahead for a period of time. Not sure if you were wanting more than this, and I think children experiencing these types are more likely to go floppy than stiff. Hope that's some help.

[will&samsmum]

Hi All :wave:

Jaclyn.......thanks for your kind thoughts and wishes, another night and all is well!!! TOUCH WOOD!! William sometimes has absent seizures. He just stares into space and his body becomes quite floppy and usually drool tends to slowly come out of his mouth....he is totally "away with the fairies" and not responsive at all. Iam happy to hear that Serena is still doing well. Wow...only 5 weeks to go till your new bubby arrives....how exciting...hope all goes well. Big cuddle to Serena. Take care and will talk soon.

Veronica........It is good news about William isn't It!!!! Thanks for your support and encouragement. I too keep having little panics about our next bubby having seizures but also have just deided what will be will be. I know it would be hard if this happened but I also know that I would have the strength to cope. It is extremely rare for 2 boys in the one family to have Periventricular Nodular Heterotopia and my Neuro & Geneticist both have never come across it so everyone is assuring me it won't happen again. I try to put it out of my mind but sometimes it does creep in there but all will be good no matter what. I hope Aiden is well. Your due date is getting so close!!! Big cuddles to little Aiden and take care of you. Will talk soon. Emma

Liz.......how did the MRI results turn out??? Hope little Charlotte is doing OK. Look forward to hearing from you. Emma

Mel.......thinking of you and little Brayden....big cuddles all round. Talk soon. Emma

Elle......thanks for your kind words and support. Group Physio with Charlie sounded like it went really well. Hope your beautiful little girl is doing well. Big cuddles to all of you. Talk soon. Emma

Take care of everyone...talk soon.

Emma :hugs:

[MamaRabbit]

Hi Jaclyn,

Charlie had absence seizures. Like the others have said, he basically just stared for a few moments and I couldn't get his attention. I used to say he was "zoning out"....when I asked the doctor about them she said he was probably focusing on the different feelings in his belly like wind, reflux etc. I never noticed anything else, no stiffening of limbs, no drooling. I think he may have been holding his breath but as they only lasted 10 or 15 seconds, it wasn't that noticeable - he never went blue or struggled for breath when he came to. He had these for the week or two leading up to his diagnosis.

A friend of ours had absence seizures for most of his life (until he had surgery), he used to just behave like he wasn't listening to you....occasionally he would lick his lips.

Elle

[♥Heaven Sent♥]

Thanks everyone for the information about absent seizures, sometimes serena just stares into thin air it dosnt happen all the time i think she done it about 3 times but i call her name and she just stares and dosnt look or talk to me im thinking mayby shes just tired and daydreaming because seconds later she looks at me.The only thing that scared me is when i was calling her, when she finally looked at me she looked sad and scared like i frightened her.

[will&samsmum]

Hi Jaclyn........quoting from some information provided to me by Epilepsy Queensland............"sometimes people who experience seizures can experience hallucinations and appear afraid and confused". This has only happened once to William....it was when he was coming out of a absent seizure and he looked at me and had a look of terror in his eyes and started to cry hysterically. Not saying that Serena is having absent seizures but just letting you know that they can be afraid and confused when they come out of them. Just thought I would let you know. Hope you and Serena are well. Big cuddles to little Serena. Take care and talk soon.

Emma :)

[moggs]

Hi,

My dd first had her febrile convulsion at about 8 months with the cause being a urine infection and her second at a year and a half with no known cause. It is a very scary experience as i was never informed that these types of things could happen and apparently 1 in 4 suffer from them! I also wasn't given any medication and told they weren't serious - she'll 'grow out of it'. I was even told not to rush her hosp when they occured. All pretty scary since how do you ever know for sure if what your child is experiening isn't anything more serious!!

I'm quite lucky at the moment. She is now three and hasn't had one for over a year and a half thou when she is really sick I will make her sleep with me so I can keep an eye on her.

Were any children hospitalised?

Moggsxx

[suemp]

my son was hospitalised once (for about a week) as he had 4 feb convulsions in about 2 hours they were concerned it was a brain infection. but the next day he was bright red so they diagnosed scarlet fever. he was 42 degrees temp and his extremities started to blacken (which they do with constant high temps) so it was more the temps that kept us in there not the fact he had a convulsion. he has had about 10 all up...not what you want to know but he is 4 and a half now and his last one was well over a year ago. so im hoping his grown out of it..now i just have to hope he does not get epilepsy as i have that and its hereditory:thumbsdown:

to those wondering about abscence seizures i have these and they can last from afew seconds to minutes. i have never hallucinated but i get the following feeling (and ive heard others get the same) its like every thing around you is not real like you are in a dream but the logic part of your brain tells you it must be...if that made any sense???as ive had them for years i can generally carry on as normal after afew seconds sometimes even during them. its really hard to explain a sensation iykwim. thats why even today its one of the most missunderstood medical conditions around.

:hugs: and good luck to you all

[will&samsmum]

Hi Moggs......My son started having seizures at 10 weeks of age and after many tests a MRI finally diagnosed him with a rare brain condition and an outcome of this is complex epilepsy. He spent 20 weeks out of his first year of life in hospital. He is on medication to control his epilepsy but unfortunately sometimes still has seizures. Iam sorry you have witnessed 2 seizures with your dd and hope and wish for you that she never has another one. Hope this has answered your questions. Big cuddle to you and your dd. Take care. Emma

Hi Sue.........I too hope and wish for you and your son that he does not have another seizure and that the epilepsy is not a hereditary thing. Thank you very much for sharing what it feels like when an absence seizure occurs. My son is only 2 and cannot yet communicate what he is feeling and it is very interesting and informative to me to hear this first hand from an actual epilepsy sufferer rather than just read it from one of the millions of pages of facts I have on epilepsy. All the best to you and your family. Take care. Emma

[suemp]

thanks emma...feel free to pm me anytime if you think of any more questions

for grand mal seizures i cant help too much as ive only had 2.
thes also vary from person to person but in my case
first seizure???if you call it that. i was having a massive absece seizure (i know the difference between a small one and one that wont go away) on a crowded bus (its usually happens in confined spaces with lots of activity going on) i said to my friend i felt bad turned to walk to front of bus than everything started to go black like a tunnel of light getting smaller and smaller to everything went black. i woke up still standing with vomit in my hand. i must of vomited not knowing and caught it...hows that for reflexes lol.so was not a huge grand mal

second was having a coughing fit and could hardly breathe all of a sudden everthing went black and i dont want this to scare you but im being honest (i thought id past over due to not breathing) it was not scarey . it felt like i was sitting up than all of a sudden i was waking up lying on the floor. shocked at the position i was in and my friends who were there said i was convulsing.i felt nothing but a bit light headed after wards and tired

theres nothing worse than having a child not well so my thoughts are with you.
:wave:

[will&samsmum]

Hi Sue :wave:

Thank you so much for the offer to PM you anytime with my questions about epilepsy....that means alot to me. William has all sorts of seizures and suffers grand mal seizures (they now call them tonic clonic) as well. It did not scare me what you said in fact it made me feel better knowing that he just blacks out and doesn't feel a thing and wakes up when it is all over. My worry was always that he was in pain and suffering but it is nice to know he feels nothing. He is usually very tired and a bit irritable afterwards and sometimes I'm sure he has a headache so I give him a dose of Panadol. Thank you for your kind thoughts and information. Take care. Emma

[will&samsmum]

Hi All........

Feeling really down this morning :( . Was up all night with William. He had 3 really bad seizures and I had to give him Midazolam up the nose to stop them. He was going so well....we hadn't had a seizure since 27th April and he was becoming so alert and attentive. Damn it!!! I can'tstop crying :crying: ....probably due to lack of sleep and pregnancy hormones!! He is sleeping peacefully now so I think I might go join him and catch up on some sleep so I can be strong if he needs me. Talk soon.

Emma :(

[suemp]

very sorry to hear about williams night :hugs: pregnancy hormones can drive us balmy at the best of times without all that extra worry. put your feet up when you can today. williams a lucky boy having such a caring mummy

:wave: for now

[suemp]

by the way emma not sure if ive mentioned before but my son is also delayed. he was born a "floppy baby" and was significantly delayed for a while going thru development assesment team for physio ans speech therapy. he is now four attends mainstream preschool and is not far behind at all, except socially...thinking to get him to repeat prep but apparently its up to the teachers who would benefit the most from it... but it breaks my heart of a morning when they have mat time and you see all the kids move away from my son. i feel like getting up and yelling how can you be so mean but they are only 5 and dont understand.:confused:

[♥Heaven Sent♥]

:hugs: Emma sorry to hear that William was up all night i hope that you feel better soon i know what its like with them pregnancy hormones they arnt very nice:no: .Praying and crossing my fingers that he dosnt have anymore fits:fingerscrossed: my thoughts are with you's
:hugs: Jaclyn

[pegasus]

Hi Emma

Sorry to hear about William's seizures. He's been doing very well :fingerscrossed: this is a minor setback and he doesn't have to have his medication upped again.

Definitely understand about the pregnancy hormones (with Jaclyn), I seem to get emotional at the weirdest of things at the moment.

Just wanted to let you know that my thoughts are with you and your family and hope that William is well on the road to getting better now. Take care of yourself and your little baby you're carrying, William needs both of you to be strong for him.

:hugs: Veronica xx

[pegasus]

Well it happened...:crying: Aiden had another fit.

It was really emotional for me (us) not sure if it's because he hasn't had a fit for about 6months or if it's because I'm 8months pregnant, or a combination.

He was having a great day (we were out for breakfast for my brother's birthday) went out to the play area before coffees arrived and he slipped over on the grass, fell on outstretched hands (didn't think he hit his head), seemed grizzly, so I picked him up and he started fitting (for about 1min). I don't get it, last week, he fell over hit his temple on a rock and no fit, last October he ended up in hospital with pneumonia and temps over 40 for 4days, no fit, then today, seemingly no reason - fit.

We took him to the hospital as he hadn't had a fit for so long, and hubby noticed blood in one of his nostrils. Anyway - no idea why it happened (they did say his leukocytes were slightly elevated, but didn't think this was necessarily it), so tomorrow I'll be trying to see when we can get into his paediatrician who'll probably say the same as before...the cons outweigh the pros in putting him on anticonvulsants and he'll probably grow out of them

In the meantime, it all came flooding back as to how he gets affected and ended up with a very upset, clingy etc boy this afternoon. It was only a short one, and hopefully no lasting effects, but hopefully this was his last.

[will&samsmum]

Oh Veronica....I am so sorry that Aiden had another seizure. Of course it was extremely emotional for you guys especially since he has been seizure free for 6 months. BUGGER! Pregnancy hormones would not help the situation also. I am sending you and your family a big cuddle :hugs: It is an awful guessing game sometimes as to why they have seizures. My heart really feels for you. I hope he is feeling a lot better today. I also hope that you and your DH are feeling better today but I know from experience it takes a few days to get back to feeling normal. As a very wise women said to me last week......take care of yourself and your little baby you are carrying, Aiden needs you both to be strong for him ;)
I want to thank you for your support and kind words last week when I needed them. They really helped pull me through. Please know that you are not alone as our thoughts and prayers are with you. Please give Aiden an extra big cuddle from William and I. Good luck with the Paediatrician. Take care of you and will talk soon.

Love
Emma

[pegasus]

Thanks for your post Emma,

After going through the same stuff as we have before following a seizure (off his food, clingy, sleep disruption etc), it brought a smile to my face.

He seems to nearly back to where he should be today (he slept fairly well last night), but was very whingy today, and I'm hoping after he went down welll tonight that he'll improve on last night and won't wake at all (it's 11pm now, so :fingerscrossed: ), and he'll be back to his sunshine self tomorrow.

Anyway, I'm finally starting to feel better after going to the doctor yesterday and sucumbing to going onto antibiotics (I hate taking medication while pregnant), but as my sister reminded me, I need to be in tip top shape in about 3weeks!!!

I was cuddling Aiden tonight (he actually wanted to cuddle up to me and not his dad after dinnner:smiliedance: ) and thinking how I'll miss having just him around - it doesn't take much to remind you how precious they are.

BTW - the paed didn't say anything new (we weren't expecting him to), but I did like the fact that we have now documented it all again, and he's writing another letter to Aiden's other doctor.

Anyway, thanks again for your support,

Love Veronica xx

[will&samsmum]

Hi Veronica......

I'm glad to hear that you are back smiling again and that Aiden is nearly back to his normal happy self. I am also glad you are feeling better. I know what you mean about taking meds whilst pregnant....I don't even like to take Panadol!!! But sometimes, as your sister says, you just have too. WOW....3 WEEKS :eek: !!! That is not very far away at all.....youlucky thing...I still have 11 weeks to go. I know how you feel about enjoying the precious moments of just having Aiden by himself soon....it is an odd feeling.....I am going through the same feelings with William and I am treasuring every second with just him but I am sure that feeling will pass when a new bubby is put into our hands and I am extra sure our boys will just love having a sibling! William is going well....no more seizures since the other day....TOUCH WOOD! His back teeth are coming through so he is a little bit more grumpy than his usually happy self and I am sure that is what caused his seizure......I can't wait until all of his teeth are finally through as with every tooth we have had seizures and sometimes even hospital visits and stays. I'm glad the Paediatrician gave you piece of mind and yes it always is good to have it documented and each Doctor inform one another. Anyway, I am so happy to hear things are back on track for you guys....I have been thnking of you each day and sending good thoughts your way. Big cuddle to Aiden and you.......hope DH is doing OK as well. Just in case something happens before the 3 week mark....good luck and please let us know how it all goes.

Take care of you and will talk soon.

Love
Emma
xo :)

[♥Heaven Sent♥]

Hi Veronica,
Sorry to hear that Aiden had another fit he was doing so well,Hope he is feeling better now and hope you and your partner are feeling better :hugs: to you its getting exciting isnt it only 3 weeks to go i wish you luck with your labour and birth if i dont talk to you before then:thumbsup:
Jaclyn

[♥Heaven Sent♥]

Just a quick update on Serena the other night was weird Serena was tired and grizzly her teeth are coming through and her dad took smething off her she got very upset and started holding her breath again by the time i got to her she was shaking a bit(dad was holding her) i dont know what happend as it looked like a fit as her body was shaking a little bit but her eyes didnt roll this time she didnt pass out.She finally took a breath and then stared for a while.After that she was ok and then went to sleep???Im confused as each time it happens it looks similar to fits in alot of ways.:confused:

[will&samsmum]

Hi Jaclyn,

Maybe you should take her to the Doctor and explain what is happening??? Do you have a video camera that you can leave lying around so if it happens again you can get it on video???? Sometimes this is the best way to actually show the Doctor what is happening. Good luck with trying to work it out. At the very begining with William sometimes the Doctor would look at him when he was in the middle of a seizure and say he is having one and then no he isn't and then yes he is........so even the Doctors sometimes have a hard time so don't feel too bad. Good luck with it all. Big cuddle to little Serena. You must be nearly due now????

Take care......talk soon.
Emma :)

[♥Heaven Sent♥]

Hi Emma thanks for your advice doctors just say its the Pallid breath holding spells and is very common i dont know its been so long since she has done it and then out of nowhere started doing it again.Today she went to hold her breath so i blew in her face and then she took a breath so that seemed to work sometimes i think that it is what the docs say and then other times im not so sure.Maybe she has one of these then it brings on a fit i dont know:confused: .Yeh im nearly due ive got 3 weeks left now till my due date but may be getting enduced.

[will&samsmum]

:( William had another seizure last night and I had to give him Midazolam up the nose to stop it. Feeling sad today :crying: ..........he is OK now....he had a good sleep and has woken up his happy little self. I am very tired as I sat up and watched him all night......might go for an afternoon nap and he can hang out with his Dad. I am feeling so scared and nervous about leaving him while I go into hospital to give birth.......I have never left him before and I am really anxious and panicing about leaving him..........

Talk soon.
Emma

[♥Heaven Sent♥]

:wave: Emma :hugs: sorry to hear that William had another fit.I know what you mean about leaving your boy to have the baby i hate leaving my dd.I am getting nervous about leaving her she will be staying with her nanny and opa(df parents) my mum will be with me and my patner when i go in to have ds.Anyway im hoping you are feeling a bit better get lots of sleep and look after yourself and bubs.Thinking of you and your family :fingerscrossed: this is the last fit for a long time.

[pegasus]

Hi Emma

Sorry to hear about William's seizure. :hugs: I hope you got some time to catch your breath and things are going okay now.

I think we're finally back to normal now (seems to take about a week now for Aiden to get his appetite and sleep patterns back). How is William's recovery during the following days/weeks?

:fingerscrossed: this is the last for William and he can work on getting stronger now.

Thinking of you,

Veronica

[will&samsmum]

Hi All.......

Just wanted to let you guys know that William is going well and hasn't had another seizure since my last post.....TOUCH WOOD!!!

Veronica......thank you for your kind words and support. I hope Aiden is well and has had no more seizures. You are so close to having your baby now....good luck with everything. After the seizure for about 5 days Williams sleep patterns were terrible...he stayed up until between 2.30am and 5.00am each night......I was a physical and emotional mess after that 5 days but I am happy to report he is back to sleeping again now......he also has 2 back teeth coming through so I think that was a big factor also.....he went for his first visit to the dentist on Monday and that went well. We have broken up Williams therapies...we were having OT, Speech and Physio all on the same day but the OT had a bit of a spit and said she could not do her job properly as we were concentrating too much on the Physio so now we have Physio & Speech one week and Pysio by itself and OT & Speech the next week. It is a bit extra work and a few more weekly trips to the hospital but we will do anything to help Williams progress. They say he is extremely far behind with his speech and they are not sure if he ever will speak but I am staying positive as he babbles heaps and I feel that one day he will speak. He says Mum and Dad in his own way and communicates with me so I just think that like every part of William he is just behind and will do it in his own time. Big cuddles to you and Aiden and hope all goes weel with the birth of your new bubby...let us know how it goes. Take care and talk soon.

Jaclyn........thanks for you support and kind words....hope Serena is well and you also are doing well. You will be welcoming your new bubby so soon....good luck with it all and please let us know how it goes. Take care and will talk soon.

I am 31 weeks along now and everything is going well......we have an ultra sound on Friday so I can't wait to see him again.

Take care and will talk soon.

Emma :)

[pegasus]

Hi Emma:wave:

Glad to hear William's going well. I hate those sleepless nights, it's funny how the doctor still says well he get's over the fits well (guess he doesn't classify the sleepless nights and not eating as anything major).

I just heard from a girlfriend whose little girl had, had fits, (oh, and she's due in August) that she just had another one 18months since her last one. (I think she's about 3). I also heard from my sister in law that my sister thinks I should just get Aiden diagnosed with epilepsy and put him on meds. (Funny how my sister is a pharmacist too!)

And about those silly OT's who think you're wrecking their therapy...Nah - don't have anything to say about that. I've done joint sessions with physios, joint sessions with SP and with all three...(depends on age of the child and my relationship with the other therapists). I'm not working atm (would be a bit hard with this belly so big - LOL), but I miss those times of working together with mums. It's funny how some parents won't even come to sessions.

Anyway - hope your pregnancy is going well for you, I'm in next Thursday for a Friday delivery!

[will&samsmum]

Hi Veronica......

Just wanted to say good luck for Friday and hope all goes well. I hope you friends little girl has rcovered from her seizure and hasn't had another one...how upseting after 18 months. Isn't funny how everyone is a doctor or pharmacist when it comes to our boys and their seizures........so many people with so many ideas!!! Oh well I suppose they mean well but sometimes can be very tactless and insensitive. I don't think they realise just how full on the side effects of anti convulsant medication can be. Another thing I hate is how they all talk amongst themselves about my son and his epilepsy......I find it extremely rude!!! I can't believe that parents don't come to the therapy sessions....I have never missed one or would even consider not being there with William...in a way it is therapy for me too and I feel like I am taking positive steps to help William progress. I bet you can't wait to get back to OT....must be a very rewarding career. William is going well.....he is so much more alert and wanting to learn and do things. Good luck for Friday and I hope little Aiden is doing well. I had an ultra sound last friday and all is good.......8 more weeks to go.

Take care of you and give Aiden and your new bundle of joy a big cuddle from William and I.

Talk soon.

Emma xo
:wave:

[will&samsmum]

:( Had a bad day today........William woke up at 4.30am and had a really severe tonic clonic seizure and was paralysed down the RHS for a couple of hours afterwards.......we had to give hime Midazolam up the nose. We have been in hospital since 5.00am and his Neurologist has put him back on Clonazapam at night :( He is Ok now....very tired and sleepy and the movement has come back on his RHS. I am exhausted and very emotional and cannot stop crying....I think it is time to go and have a lie down................

:( Emma

[suemp]

thinking of you and your little brave boy :hugs: :kiss:

[MamaRabbit]

Sending you and Michael loads of love and hugs with a special little prayer for William, the little soldier :) Be sure to look after yourself (and Samuel) too. Remember what we say.....it takes a special mum to have a special child :thumbsup:

[will&samsmum]

:( Had another bad night.........William had another big seizure and we had to put Midazolam up his nose again.......poor little fellow. He has started having seizures between 1am - 2am every night but last night was the first time we had to use Midazolam on him.......don't know what is going on........we see his Neuro on the 17th so hopefully things will go ok until then........I really hope we don't have to put him on any more medication :( . Feeling very tired and sad.......doesn't help being 35 weeks pregnant........can't sleep as I am on seizure alert all night every night!!!! On a good note we had our 4 monthly Paediatrician check on Thursday and she is quite happy with his progress so that is good and we get a set of parallel bars to bring home from Physio next week so we are looking forward to that helping him develop evn more.

He is Ok at the moment....still sleeping.

Hope everyone else is doing OK.

Take care and talk soon.

Emma

[will&samsmum]

We are having a really bad run......William had 4 seizures last night and I have had about 2 hours sleep........I am exhausted and so is he........don't know what is going on????? Feeling really down :crying:

[xkwzit]

Hi Emma

I just wanted to give you a big hug :hugs:

I hope it all improves for you very soon.

[shonaya&connorsmummy]

Hello al
My 9 mth old daughter was diagnosed with infantile spasms at the age of 5months, she has had several stays in hospital and still they have no answer for us as to why she is having the seizures they have given her most of the tests including the MRI scan and still no answers they originally treated her with vigabatrin but the seizures only went away temporarily so they decided that ACTH injections would be benificial they did seem to work so they stopped them and left her to just the vigabatrin but for the past month her seizures have returned and she can have three seizures of up to 20 clusters at a time the doctor continues to increase her meds but it doesnt seem to have any effect except to make her very sleepy, i am interested to see if anyone else knows any other solutions that worked for them, that i could querie the doc on, i feel sometimes that they arent doing enough for her, i seem so helpless when she is having them and often blame myself because she was born so early but i dont know if this is a cause or not if anyone has any info that could help me i would appreciate it.

[will&samsmum]

Hi Shonaya&connorsmummy.........sorry to hear that your DD is having seizures. My son has a rare brain condition and as a result has complex epilepsy. We are lucky enough to have one of the best Paediatric Neurologists in Australia called Dr Barry Appleton.......he is at the Royal Brisbane Childrens Hospital and also does private practice as well.......I would highly recomend trying to contact or be referred to him.......I see by your postcode that you are somewhere in Queensland. He is an amazing Doctor and has been the light at the end of our tunnel. William started having seizures at 10 weeks of age and was put on a drug called Phenobarbitone....then Dilantin was added...then Clonazapam and then finally a newer drug called Topomax. He is 2 now and has beened weened off everything except the Topomax and a small dose of Clonazapam before bed. Unfortunately he still has some seizures but nowhere near as many as he used to. Many things push him over the edge such as teething....that has caused a seizure with every tooth and many a hospital stay, any time he is sick, when he gets too hot...we have air conditioned his room as we live in Brisbane, when he gets a temperature and sometimes for no apparent reason at all. The meds did make him very sleepy for awhile but his little body soon adjusted.....the have also slowed his development down and we have Physio, Speech & OT every week at the Hospital. I also too would recommend contact Epilepsy Queensland....they are a wealth of information and support and have all the new and old facts on epilepsy and seizures. You musn't blame yourself......it is not your fault....just one of those things that just happen....they say Special children are given to special mums!!! I know the helpless feeling is awful and very overwhelming but you just being there beside her and her knowing this is the best help she will ever have. I wish you and yur family all the best and know that you are in our thoughts and prayers every day. If you ever need to talk I am here to listen. I know it seems like sometimes a very long and lonely journey but please do not feel that you are alone. Big cuddles to you and your DD. Take care and talk soon. Emma:)

To xkwzit.......thank you for your kind words and thoughts........it helped me to know someone was out there listening. Good news is William made it through the night last night without a seizure. Thanks for your hugs!!

Take care.

Emma :)

[pegasus]

Hi Emma

Sorry to hear about William's bad run with the seizures. :crying:

I haven't been around as often as usual (been up at night with the new one), but if ever you want some more support, I'm happy for you to email me.

:hugs: to you and your family and :kiss: for William. Hopefully the good night you had last night is a sign that he's on the mend again.

Take care of you and your family,

Love Veronica xx

[will&samsmum]

Hi Veronica........Congratulations on the birth of your little girl!!! What did you name her??? She looks beautiful.

Thanks for your support and I will email you if I need to.

I spoke a bit too soon this morning....just after I wrote on Bubhub I went in and found William having a big Clonic Tonic seizure and had to put Midazolam up his nose to stop it....he then had the Todds Paresis down the RHS again and we spent the day in hospital again. They have taken him off the Clonazapam again and increased his Topomax dosage to 45mg a day (he was on 30mg). So we will see how that holds the seizures.

So good to hear from you....have missed you alot.

Big cuddles to you and your family.

Take care.

Love
Emma

[QTB]

Hi everyone, i havent posted in here for ages as iv been trying to keep my mind off everything and look at the bright side... but it hasnt worked as now things have gotten alot worse, brayden is on tegretol 3x daily, which seems to be doing the trick for the fits, but he had his MRI and Lumber puncher last fortnight and we got the results back, hes got a cyst on his brain that is causing the seizers.... basically the dr told me that they are just going to keep an eye on it, if it grows they will operate -if it doesnt (:fingerscrossed:) then they will just keep him on meds to control the fits....

has anyone else had this? cysts on the brain i mean?

[LilSqz]

Hi Guys,

its been ages since I have posted, (sorry!!) trying to keep up with little Charlotte.

Emma, I know that you are due soon (your due date is the same day as my sis' birthday so easy date for me to remember). all the best with the little bub! sorry to hear that William is having a bit of a bad run of late. big hugs to the both of you. :hugs:

Veronica, congrats on your little girl - what have you named her?

Mel, sorry to hear about your little boy. At least they know the cause of the seizures and here's hoping that htey don't have to operate. My dd, Charlotte is also on tegretol, twice daily (she started 3x but they dropped her down).

Since I posted last, Charlotte is doing okay. She is still having seizures, so the doctors are still investigating. We had dropped the dilantin :) and are now just on the tegretol. But as she is still having seizures (just relatively little ones though luckily) her dosage has been upped, but if they still contine we will probably be looking at a second drug again (probably epilim). Developmentally she is going well so I really cant complain!

The MRI came back normal. We had another eeg just the other day. but it was a sleep deprivation one. So was not fun, apparently the lack of sleep increases epileptic activity in the brain so that they have more chance of seeing epileptic acitivity during the eeg. Has anyone else had this done? keep reminding myself that this is a means to an end but it was so not fun. we are seeing the paed neurologist next week (she comes down from sydney once every two months), so hopefully we may find out what is happening.

hugs to all your little ones.
lizx

[suemp]

i had a sleep deprived one where i had to stay awake all night than go in for the test. it finally diagnosed the epilepsy that the mri and normal eeg did not pick up. i too am on tegretol. hopefully this test will give you more answers:hugs:

[LilSqz]

Hey Sue,

Thanks for that. I hope that it does show up something - as it was sooo hard keeping her awake and I felt like such a mean Mum! Ordinarily they don't do children under 2 but our paed is keen to make sure we have covered all the possible bases.

its also good to hear from someone who can tell me what it is like to have epilepsy. its hard after Charlotte's just had a seizure and she is so very tired and subdued she doesn't even cry she just wants to be cuddled (or maybe it smore that I just want to cuddle her).

hope everyone's little ones are doing okay.

lizx

[will&samsmum]

Hi All...........

Wanted to let you all know that our new little baby boy Samuel arrived on Monday 21st August. We came home from hospital yesterday and he is doing just great!

It was so hard leaving William for those 8 days! What was even harder was that he is continuing to have seizures on a daily basis and I was not with him...but I am now and all is good again. He didn't have a seizure last night....funny hey....the first night we were back together and in our own home and he didn't have one....hopefully we can get through another night tonight without one.

Liz....thanks for your kind words and support and I have replied to your private message. It was great to hear from you and good to hear that Charlotte is doing Ok and her develpoment does not seem to be delayed too much. Good luck with getting the seizures under control...it is frustrating trying to find the right medication but it will be worth it when they do find the right one. Good luck with the results of the MRI and let us know the results. Take Care.

Mel.....Sorry to hear about the cysts on the brain. Fingers crossed he does not need an operation. OPne good thing is that his medication seems to be keeping his seizures under control. Remember you are not alone and I am here if you need to talk. Big cuddles to you and your family.


Hope everyone else is doing well.

Take care and talk soon.

Emma

[QTB]

Mel.....Sorry to hear about the cysts on the brain. Fingers crossed he does not need an operation. OPne good thing is that his medication seems to be keeping his seizures under control. Remember you are not alone and I am here if you need to talk. Big cuddles to you and your family.

Thanks heaps... im ok now, i was just sooo shocked when i first found out.

HUGE CONGRATS on the arrival of Samuel!!!

[LilSqz]

Congratulations Emma on the birth of little Samuel!!:smiliedance: Sorry to hear that William is still having seizures. Its funny that he didn't have any your first night all home. I hope that he has continued to be seizure free,

Mel, I am really glad that hte tegretol is keeping your little boys seizures under control. It would have been so hard to find out and get used to the idea of the cyst. again, :fingerscrossed: they don't have to operate

hope all the bubbas are doing okay

lizx

ps - we made it through August seizure free :smiliedance: so happy as I this is her first seizure free month since she was diagnosed. she is sleeping at the moment, they look so beautiful when they are blissfully sleeping (completely unaware of all the stress they cause!!) she is so worth it though

[will&samsmum]

Hi All.......have had a real bad couple of days.......on Wednesday night William had a run of bad tonic clonic seizures and the midazolam did not work and we had to rush him to emergency and when we got him to emergency he started having seizures every 2 - 5 minutes and they couldn't stop them......they tried midazolam and phenytoin through a drip...huge amounts of it but it did not work and after about an hour of full on seizures they tried an old fashioned drug called peraldahyde at my request and they had to put it up his little bottom and finally that stopped it and he went into a very deep sleep...it has stopped it before when things have been bad so that is why I asked for it....it is not nice but it is better than watching those awful seizures every 2 minutes...he was so distressed and hooked up to machines it was terrible. They then admitted us to a ward and had an intensive care nurse sit at the end of his bed for 24 hours. We were discharged this afternoon and they have increased his Topomax dosage daily and also the amout of midazolam we can give him after a seizure. It was so hard to watch and I had to have my new 2 week old baby with me so it was pretty full on as he was admitted as a "border patient" so I did not have to leave William. I am pretty distressed at the moment :crying: and feel really down. I just wish it would all stop...all of these doctors he sees and no one can make it all stop. Just feeling down and post pregnancy hormones....really tired. Hope everyone else is doing better than us. Take care and talk soon.

Emma :gloomy:

[pegasus]

Hi Emma

Sorry to hear that William has been having a hard time and that you've been so distressed. I know how hard it is with the 2year old and a newborn, let alone a toddler with seizures.

I don't have any advice, but wanted to first of all say congratulations on the arrival of Samuel - that is good news.

Also :hugs: to you and William and I hope things start going better for him and you soon.

I think Aiden may have had a minor seizure today - he was outside playing while I was getting him a drink and came to the door distressed, he then needed cuddles and was throwing his head back, going floppy and getting more distressed. He's had these episodes before and I'm only now beginning to wonder if they are tied to his seizures. Who knows? You only just think you're safe and then something happens.

Anyway, thinking of you and your family, extra hugs and kisses to William, Samuel and you, you deserve it Emma - you're a great mum doing the best for both your boys in a difficult time

Veronica xx

[will&samsmum]

Hi Veronica......

Thanks for your support and kind words and thanks for your welcome to baby Samuel. William had another big seizure last night and I rang the Hospital this morning and demanded to speak to the head neurologist (our Neuro is on holidays at present :banghead: ) and she rang me straight back and organised for William to have an urgent EEG this afternoon....it is a portable EEG as they want to monitor him for 24 hours to see what is going on so he is currently lying on the lounge room floor with things all stuck to his little head and a portable EEG machine beside him....looks a bit scary but isn't hurting him at all. She has also booked him in for another MRI but that will take a couple ofweeks to happen. So hopefully the EEG might shed some light on what is going on in his little head and unfortunately they think they might have to put him back on the Dilantin but I am at the stage where I just want the seizures to stop so if it is Dilantin that does it then that's what we will have to do. So I will let you know how it all turns out. Sorry to hear that Aiden had an episode.....hope he is all well now and recovered OK. William also gets floppy and needs cuddles after his seizures. Hope you ar OK and it did not distress you too much. Please give him a big cuddle from us. Samuel is doing really well.....he is a great baby. Anyway, big cuddles to you and your family and will talk soon.

Hope everyone else is doing OK.

Take care and talk soon.

Emma
xo

[kate_perth_10]

hi there
Just thought i'd say hello..my 2 and a half year old Nicholas has just been diagnosed with epilepsy (absence seizures) so this is all new to us...
He started on meds (epilim) about a week ago and it seems to have totally changed him...he sleeps all the time and when he is awake is extremily angry and grumpy...has anyone else had their child on this?? so far from other people i've heard nothing good about it :thumbsdown: The good thing is that the seizures seem to have calmed down alot, not as many as before...

Anyway just thought i'd say hi and i hope to talk to you soon....:)

[will&samsmum]

Hi Kate.......lovely to hear from you. Sorry it is under the circumstances of Epilepsy. Our son has a rare brain condition which one of the outcomes is complex epilepsy. Unfortunately I cannot advise you on epilim as that is one drug we have not tried yet but I can tell you that with all of the medication they have tried on William that in the first month and a bit he has ben really sleepy and moody but after his little body has become acustome to the medication he bounces back to his happy little self so if it is like the other anti convulsant medication your boy should be back to himself after a few weeks. Great to hear it is calming the seizure activity down hopefully it will get it totally under control for you and you won't have to witness the seizures for awhile. I know how hard it is watching your baby have seizures....heartbreaking. Does your son have an underlying condition that has caused his epilepsy? I am always here to talk if you need to. William was diagnosed and has been having seizures since 10 weeks of age and he is now 2 1/2 so we have learnt alot throughout the couple of years. I totally recommend becoming a member of the Epilepsy organisation in your state as we are a member of epilepsy queensland and they have been such a great support and wealth of information to us since William was diagnosed with epilepsy. Anyway....big cuddles to you and your little boy and keep your chin up. Take care and talk soon.

Emma
xo

[pegasus]

Hi Kate

As Emma says, nice to hear from you, but sorry it's under these circumstances.

I noticed you're in Rockingham - I'm also in Perth, so if you ever want to get together then I'm sure we can arrange it.

I haven't joined any epilepsy association, but after reading Emma's post, maybe that's a thought.

Anyway, just wanted to add my support and :hugs: for you - we'll probably catch up one day (I'm going to the next SOR meet next week)

Veronica

[kate_perth_10]

Thanks guys for your support it means alot :hugs:
There isn't any underlying issues but this has happened 3 weeks after his MMR injection (he had it late) so whether there's any connection i'm not sure...but the neuro did say that it could have brought the epilepsy on (not caused it)
I feel terrible trying to shove medicine down his throat but hopefully he'll settle down in time
Veronica- we won't be at the meet next week cause i have my driving test on that day (:fingerscrossed: i get it ) but hopefully one day we could meet up.

Really great to know that there's alot of people out there...:thumbsup:

Hope everyones kids are doing well :D

[tikaani5]

Sorry to hear about your troubles...I don't know if this will be of any use - our son had many problems with seizures and we must have tried a million drug cocktails...but I found that getting point percussion and a technique called neural mobilisation from our therapist helped him to settle and stabilise - It certainly has helped us to mange his seizures and bought a bit of sanity back...

[suemp]

kate perth 10 : im an adult on tegretol for absence seizures and it took me acouple of months for my body to accept the drug. i too was tired and a bit emotional but its all good now. good luck with it

[will&samsmum]

Hi All.......

Hope everyone and their beautiful children are doing OK.

Well the Neurologist got back to us yesterday and said that the results of William EEG were the same as they had always been and they are stmped as to why he is having all of the seizures that he is having?????:banghead: They have put William on a new drug called Nitrazepam (which is Mogodom) and he has to take it before bed each night. It is basically a sleeping tablet that they are hoping will get him through the night seizure free. :fingerscrossed: Hopefully because he is only taking it at night it will not make him to groggy or slow during the day. He had 1/2 a tablet before bed last night and he slept through the night with no seizures.....TOUCH WOOD!!! So hopefully we might get another nights peace tonight. He had a really bad night on Monday night where he had seizures every hour from midnight until 5am in the morning and that is when I gave him a big dose of Midazolam and he then slept for 9 hours!! I am pretty sleep deprived at the moment being that I have a new 4 week old and with Williams seizures.....a little snappy and can cry at the drop of a hat!!! Hopefully this new medicine will help us get a few nights of sleep. Good news is that his Neurologist is back in 2 weeks and we have an appointment to see him on the 2nd October.....I can't wait to see him and get a better plan for the future. He needs to have another MRI but we have not been given a date for that yet.

To Tikaani5.....I am very interested in talking to you moe about the therapies you mentioned. What condition does your boy have that has triggered th epilepsy and how old is he?? What medications had he tried and failed on?? Where do you go for the therapies you suggested?? I look forward to hearing from you either here or PM or via email. Thanks for your suggestions and help in this regard.

To Suemp.......Hi hope you are weell. By any chance have you tried thespecial diet for epilepsy??? If so what do you recon and what side effects did you get???

To Kate.......Hope all is going well in your world. Veronica is such a wonderful person and she has been wonderful support to me and I am sure she will be to you. Good luck.

Veronica.......Hope Aiden is better and has had no more episodes.

Anyway.....take care of you all and will talk soon.

Emma ;)
xo

[MamaRabbit]

Hi everyone, and welcome to all the newcomers. I haven't been on the site for awhile....life seems to have just taken over. More hours at work, moving house, mother in law visiting, Charlie's therapy, new baby....makes for one busy lady really.

We saw Charlie's neuro yesterday and last night we started to wean him off his Topirimate. It will be a gradual process over 4 months but it's now or never :fingerscrossed:

We are also having the little man assessed today by another group to see if their physio/ot/speech services may be better for him with regard to the development delay so I'll let you know how we get on there.

Emma, I'll drop you a separate note with some info I found.

Take care everyone,

X

[LilSqz]

Hi All,

sorry its been a while since I last logged on, time is just flying at the moment.

Emma, so sorry to hear about William's bad run. I hope the new drug helps him through the night and that you are getting some sleep there when you can.

welcome to all the newcomers!

Kate, the dosiness and lethargy are quite common I think. When our daughter first started her meds she was really drowsy and not her littleself. As ppl have said though, it does pass as their system gets used to it. My daughter is on tegretol (although she has also been on dilantin and had bursts of midazolam). However, my sil was on epilim as a toddler and she is all good now, so hang in there.

My little one is going okay. we are seeing an opthalmologist next month- as anyone seen one of these? The paed. neurologist wanted us to doublecheck her eyes. her seizures have settled, but are still happening so there is no chance of weaning her of the meds yet. other than that, she is beautiful - she has just started crawling so now there is a whole new level of stress (but in a good way!!)

hugs to all the bubs
lizx

[will&samsmum]

Hi Liz......Congratulations on little Charlotte crawling....hooray:smiliedance: waht a wonderful acomplishment for you guys. I am really happy for you. William has seen an opthamologist a couple of times and from now on yearly. They are great and I am sure they will help heaps. Thanks for your support with Williams stuff. I have sent you a PM.

Hope everyone else is doing good.

William is doing well. The new medication helped him sleep through the night and we have only had 4 seizures (minor ones) since he has been on it. We have started a new speech program and all of his therapies start up again tomorrow. We have also been looking at some walkers for him so it is full on in William Land at the moment!!

Samuel is doing well...he is a lovely little baby and is progressing nicely.

Anyway, take care of everyone and will talk soon.

Emma
xo

[will&samsmum]

Big News........William just held a Tim Tam in his hand and ate half of it!!!!!:smiliedance: He has never put food in his mouth before by himself let alone eaten any of it.......I'm so happy :D I should have known a Tim Tam would work!!!! YAY!!!!!!!

Good Night All.

Emma :smiliedance:

[pegasus]

Hey Emma

Great news about the Tim Tam. Now isn't that a good excuse to have tim Tams on hand in the house?

All has been going well on our front, but more hectic with the two kids.

Just a quick question - After Aiden's last seizure, we noticed he had a blood nose (not a major one). Yesterday he woke up from his day sleep very grizzly and upset - I noticed about the same amount of blood around one of his nostrils. I'm wondering if any of you have had blood noses with seizures. There have been times I've wondered if Aiden's had an episode as his behaviour has been the same as after a seizure, but I haven't witnessed a seizure. This has been quite frequently after a nap when he basically cries and screams for up to an hour following getting up, and I've wondered if something's gone on that I haven't witnessed.

Anyway, glad to hear the new medication is going well Emma, and go the new walker, I'll be waiting to hear how he goes.

Liz - great you now have a crawler - she'll be getting into places you never dreamed she could!!

Veronica xx

[♥Heaven Sent♥]

Hello everyone,
Thought id pop in and see how you's girls are going,congratulations Emma on your little man eating a tim tam by himself *YAY* hope everyones bubbas are doing better.Me and my partner have broken up so it has been a bit hectic in our house at the moment and my kids are really feeling the stress.Serena had another spell last night she tripped over our rose bush in the garden and she held her breath and passed out it was very short though and didnt seem to have a fit of any sort which is good.She was very tired after though and very pale and very grizzly she has also been grizzly today as well.
Anyway mummies look after yourselves and those bubbas
Night xo Jaclyn

[will&samsmum]

Hey Veronica...great to hear from you. It is a mighty fine reason to keep a stash of Tim Tams in the house isn't it!!! lol. We were so excited and proud when he did it....he was lying in the middle of our bed and we both just let him go with it...needless to say our bed was a lovely mess of chocolate when he had finished!! I wanted to run up and down the street yelling "my son just ate a tim tam" but I thought they might send the little men in white coats to come and get me!! It sure is more hectic with 2 children...I know what you mean. 99% of Williams seizures occur when he is waking up from a sleep. His Neuro said that is totally normal and when most seizures occur as the brain is going from sleep mode into awake mode and there is heaps of electrical activity happening at that time. That also showed when he had the EEG on for 24 hours. Maybe they could put one of the portable EEG's on Aiden for 24 hours and see if that is happening???? In relation to the blood nose I haven't noticed any blood noses that coincide with Wiliams seizures but he dose occassionally get a blood nose for no apparent reason. That is awful that he cries and screams for up to an hour sometimes after waking up....maybe he has had seizure activity and has a headache???? Have you told the Doctor about this??? Anyway...big cuddles to you and your family and take care and will talk soon.

Hi Jaclyn......nice to hear from you. Thanks for you congratulations on the Tim Tam eating....we are very proud parents at the moment and are going to try him with another one today...if all goes well with the Tim Tams for the next couple of days we are going to substitute them with another food and hopefully start the eating going....we are very excited!! Sorry to hear that your relationship has broken up....must be hard on you with the 2 kids and all.....I am sending you a big cuddle:hugs: Also sorry to hear that Serena had another episode....hope she is feeling better. Anyway take care of you and the kids and keep your chin up throughout this difficult time. You are in our thoughts.

Hope everyone else is doing OK.

Take Care

Emma
xo

[will&samsmum]

Hi All.......just wanted to share some more good news with you all. William has started moving around sitting up on his bum. I sit him across the room and face him away from me and he slowly turns himself around and slowly makes his way across the room until he is touching my leg!!!:smiliedance: He is very slow at it but hey....he is moving!!! YAY!! I can't actually call it crawling but we are so thrilled that he has got the concept of moving. His little brother has really helped out as I think William is a little jealous when we hold him and he babbles extra loud toget our attention and has started moving!!! He is really trying to communicate to us. It is a very happy time in William Land at the moment.

Hope everyone else is doing OK.

Thanks for listening.

Take care and will talk soon.

Emma :D
xo

[pegasus]

Ooh Emma - how exciting.:yelclap:

That's great news. Hopefully now he'll get the hang of his walker well.

Great to hear (I'm assuming he's still seizure free since your last post).

I've heard that siblings are great motivators for lots of things.

Take care

Veronica xx

[MamaRabbit]

Hi Everyone - great news on the crawling/moving around (Emma/Liz) just brilliant. Little Charlie looks so close to doing it himself, fingers crossed it won't be much longer, he is itching to get going. We are a few weeks into weaning off the meds and Charlie is laughing alot more, eating more and generally seems alot more strong (and his balance has improved) - here's hoping it continues on the up. We are also trialling a walker at the moment for Charlie.

Little Sophie is lovely, laughs all the time and rolls around, reaching for things with such purpose, it's incredible to witness.

Veronica - many many months ago Charlie went through some nose bleeds. I often noticed it when he woke up so I hadn't witnessed a seizure or really a change in mood to indicate he had a seizure. I went to the doctor twice just to check it out (in fact 2 doctors) and nothing came of it. He hasn't had a nose bleed for at least 6 months now.

I hope everyone else is happy and well.

xx

[will&samsmum]

Hi All......just letting you guys know how William is going. He trialed a Walker last weekend and did really well in it (thanks Elle for showing us!!) so now we are taking the steps to get him one. He started Conductive Education this week and they are really happy with how he went and so am I.....it was a really positive experience and I would totally recommend it. They are going to help him stand, crawl and walk......might take awhile but they assure me that he will eventually do it. He is still working hard at Physio each week and Speech & OT every fortnight. We have just dropped his Topomax back from 4 capsules atnight to 2 capsules and everything seems to be going OK.....TOUCH WOOD!!! Things are really positive and happy in William Land at the moment. Seizures also seem to be under a lot more control....he still has the occassional one when he is waking up and we are working on stopping that. Anyway, hope all of you and your children are doing well.

Look forward to hearing from you.

Take Care & Talk soon.

Emma
xo

[pegasus]

:thumbsup: Fantastic to hear your good news Emma.

Sounds like things are a bit less stressful for you at the moment and that must be helpful for Sam as well as Will.

Things have been going well for us too. I had a bit of a scare on Friday tho' - I was holding Kayleigh to get her off to sleep and had Aiden in his high chair finishing off his weetbix. I hadn't been strapping him in as he usually sits well. Anyway - he decided it was time to get down, so I went to get the tray off and he started hurrying to get down - I had the tray in one hand and Kayleigh in the other, so watched in slowmotion as he threw himself backwards off the chair and banged his head on the tiles.

I'm pretty sure he had an episode but didn't notice all the usual signs (rolling eyes, full convulsions). He still went into extensor spasms, drooling and wailing as well as being unconsolable. I'm not sure what a normal reaction would be to hitting your head on tiles from a height of about one metre, that's the prob.

Anyway, after having an awful day for the rest of it, he seemed fine by Saturday, so things are looking up. What I hated as well was that Kayleigh became so out of sorts as I had to attend to Aiden so I ended up with two screaming children in my arms and was pretty rattled by the end of the day as neither child would then settle for any sleep and I had been notified at 10pm the night before that my stepkids were coming, so had to organise some things for them to come. I hate being torn between which child I should be attending to. My instincts were to be with Aiden, but how could I leave the 3month old getting more riled up.

End result - very stressed mumma!

All good now though - it's amazing what a difference a couple of days makes if you have a couple of good night's sleep! I think I'll be dreading Kayleigh getting to about 9months or so as that's when Aiden had his first fit - that one was a febrile one, but who really knows... I just take it all day to day now - it's certainly made me a bit more relaxed about just accepting some things now, having a son with these seizures. It's funny, for someone who loves being in control then having something happen to your child which you can't always control, it makes me a bit more laid back about some of life's things. Whatever happens, I'll just deal with it when it comes. Doesn't mean it doesn't stress me when it does happen, but I think it's changed my attitude about the importance of other stuff in my life not being worth the hassle sometimes.

Sorry if that didn't make sense - was just musing to myself.:o

I just pity the two men in the ute in front of me on Friday afternoon who pulled into the parents with prams spot I was to take. It was the last one and one woman who doesn't want to be out of the house in the first place, but had things to do, with two cranky kids is not one you want to cross... "Nice baby in the tray guys":devil6:

:thumbsup: to the young man who helped me load some stuff in the car when returning to the car with my load and returned my trolley (young guy bout 18).

Amazing how venting this stuff out on my computer can destress me too LOL

[will&samsmum]

Hi All.........having a bad time these past two weeks. We have had a couple of trips to Emergency....one in an ambulance and have had a stay for 3 days in hospital. They put William on a new drug called Keppra and his seizures got worse so they are now taking him off that and have put him on Epilim. Now we all have the flu...including baby Samuel from being at the hospital....feeling rotten!!! Hopefully things will start to improve. Hope everyone else is doing OK.

Take Care and talk soon.

Emma

[♥Heaven Sent♥]

Hi Emma,
Just a quick note,sorry to hear that William hasnt been well,I hope that the new meds starts to work soon,how is William going with his Tim-Tam eating?Hehe too cute.Mmmm i want tim tams now.I hope you and your family are feeling better soon damn colds hey?My two kiddies have just gotten over gastro ,its not nice seeing them sick is it.Anyway wishing William well
xoxo Jaclyn

[will&samsmum]

Hi All,

Just wanted to wish you all a Merry Xmas and thank you for all of your kindness and support this past year.

William is going well and his seizures are sort of under control.

MERRY XMAS and HAPPY NEW YEAR!!!! :xmas:

Big cuddles to you and your beautiful children.

Take Care.

Emma :reindeer:

[pegasus]

Oh Emma - I was so hoping that your post was as it was!!!

I steered clear of this thread when Aiden took another turn for the worst about a month ago. I know I should have posted here, but I got a bit disheartened and really opted out. I was just thinking last night - that I had to do a Christmas greeting here but you beat me to it!!!

On the first subject, yes, we took another trip to emergency with no reason (apparently) for Aiden's seizures and to just keep an eye on him. No biggie - we've been down this road before.

All was good again in the next couple of weeks, but it took a couple to get there.

On the second, lovely to hear all going well with everyone and Merry Christmas to all. Isn't it fantastic that our kids are finally getting to the age that they recognise Christmas. (Aiden doesn't properly - he sees trees/decorations, and santa and says Christmas, but doesn't properly understand it all). Looking so forward to seeing his dad play with him on the bike we bought for him for tomorrow.

Merry Christmas to all and to all a good night!!!:tree:

[suemp]

i got my licence taken off me as i still was having absece seixures on tegretol so now im on tegretol and keppra. the first week on keppra i felt high the whole time. feeling bit better this week but really tired. hope it settles down

hope your cherubs are enjoying xmas and you lovely ladies get a chance to relax:hugs:

[MamaRabbit]

Merry Christmas everyone....here is to a great 2007! Sounds like quite a few of our littlies received new bikes from Santa! Charlie is still coming off the meds, so far so good. He will be off them entirely at the end of Jan. His senses (and strength) have certainly been awakened since we started weaning him off. He seems to have found his voice too! Much more vocal which is fabulous, but can drive me mad at times. Poor little guy is now more aware of his frustrations, particularly with Sophie crawling around. It is only making me work harder on his physio etc and we are having small wins all the time. Fingers crossed it continues into the new year.

My thoughts are with you all and I hope the little ones are thriving and healthy and you all have a well deserved rest.

X

[will&samsmum]

Hi Veronica......Sorry to hear you had another trip to emergency...hope everything has calmed down now and you had a great Xmas. We had a lovely Xmas and William got a bike as well. He has had a few seizures over Xmas....he woke up with one on Xmas morning :( but we managed to still have a wonderful day. He had another big one on boxing day but as I said we still had a wonderful Xmas. Samuel enjoyed his first Xmas....well he enjoyed the wrapping paper!!! Anyway...big cuddles to you and your family. Hope to hear from you soon.

Hi Sue...sorry you have been having a bad time with your seizures and sorry you have lost your licence. They recently put William on Keppra and it did not agree with him at all so they have swapped it and he is now on Epilim instead (also Topomax & Nytrazapam). Hope you and your family had a great Xmas and I hope your epilepsy is under control. Our thoughts are with you. Take care of you.

Hi Elle.......Great to hear things are going so well with Charlie and hope the "little wins" keep happening for you guys. Big cuddles to you and your family.

Hi Jaclyn...thanks for your kind thoughts and hope you and your family had a great Xmas.


Hope everyone else is doing well and had a great Xmas. Cheers to a Happy & Healthy 2007.

Love
Emma
xo :wave:

[will&samsmum]

Hi All......feeling a little overwhelmed tonight. Our break is over and it is back to all the therapies with William. Monday Speech, Tuesday Speech & Occupational Therapy, Wednesday Conductive Education, Thursday Gross Motor Skills & Friday Physio!!!!!:confused: He is still having seizures every couple of days and I am getting so frustrated that they can't seem to get his epilepsy under control. :banghead: I know all the therapy will eventually pay off but it is such hard work and takes so much out of both him and I...oh well...as they say "no pain no gain"!! Little Samuel just comes along with us to everything...sometimes I feel bad that most of our life is about William but I am trying my best to have some "Samuel" time.....we are going to start swimming on Saturdays just me and him. Anyway...sorry to be such a downer I just needed to talk and let my feelings out.

Hope everyone else is doing well.

Talk soon.
Emma

[pegasus]

:hugs: Emma. Good and bad to hear about therapies starting again - I can just imagine the business of it all. I remember seeing some mums come in our doors 3 or 4 times a week (speech, physio, OT, ...) and we'd know them so well. At some stages, some of the mums and kids would take a well earned break so mum could concentrate on special time with other kids.

Good to hear you've got some swimming sorted with Samuel.

As for us, I still wonder how many seizures Aiden has that I don't witness. Just today, I'm sure he had one. I was sure he was safe and fine - pushing his lawnmower around outside - I'd checked on him (not 5mins earlier), but was trying to get Kayleigh to sleep. Next - I hear the screams and go to him and he's inconsolible. He gave way into me and wouldn't give me eyecontact. I'm pretty sure he fell over as he had dirt over him, but couldn't find any evidence of hitting his head or anything.

It's one of those things where I wonder if we're to accept that this is a lifelong thing or if he'll get a diagnosis of epilepsy if he still has these episodes after he turns six. I also wonder if there is something underlying as I'm very concerned about his speech development. (should be almost talking in sentences at this stage, but usually only one word (two at the max, and only then it was one time 2 days ago)). Wow - that was weird to say - all my hubby's family say - don't worry - he's fine, but I'm pretty sure he's not. It probably only seems weird to me as being a therapist I guess I worry if I place too high an expectation on him.

I'm organising a lunch with a friend of mine who is a speechie and hoping she can give me an idea what she thinks. He just seems to give up on developing after any episode for a bit (ie. not eating, whinging, clingy, not as active) and so I wonder how much I'm looking for him not being up to the right level. (He's also still really small, (size one, but turning 3 in April).

I guess after I see my friend I'll probably end up back at the paediatrician and look at getting an MRI. The paed hasn't really been worried about his speech before, but then again, not much is expected before this age.

Thanks for "listening", it's the first time I've got that out (except for to the community health nurse who echoed my sentiments, but said I'd probably get him seen quicker than to get him on a wait list (and the private speechie in my area is one I've worked with, but don't put a great amount of trust in).

[will&samsmum]

Hi Veronica......great to hear from you. Thanks for the hugs I needed them. We have just completed a great Speech Course called Hanen - It Takes Two. I highly recommend it....something to look into. Thank you for sharing with me....I feel privaledged. It's hard to say it I think because it makes it that much more real. We have just been assessed to start a private Speech Therapy and were told that William understands at a 6 month old level and communicates at a 1 year old level. That was a bit hard to hear...even though I sort of new that when they actually said the words it hurt. I have been a bit down all day after they told me. They want to see hime twice a week. He also has Speech at the Hospital once a week. I think speech is the hardest thing to lear. In Williams case the signals in his brain are not working properly so they are physically ging to have to show him how to speak.....by using a method called PROMPT. These Speech therapist have gone over to the USA and have all these new therapies and techniques so hopefully they can help my boy. They think they can. The Epilepsy has really effected Williams development. They keep telling me if they can just get the seizures under control that he will develop so much but they can't seem to get the blasted seizures under control.:banghead: It is so frustrating. Good luck with your lunch date withthe Speechie. One thing I have learnt is to trust myself with what I think is right and wrong for William. It's easy for family members to say - don't worry he is fine - trust in your instincts as I am sure you know better than anyone. Wow Aiden is tiny....William is a size 3 - 4!!!!! But he is also very tall for his age. I'm sorry that Aiden seems to keep having unusual episodes and hope that they stop. Anyway...thank you for listening and good luck with everything.

Big cuddles to you and your family.
Take care and will talk soon.

Emma
xo

[MamaRabbit]

Hi Veronica and Emma (and everyone else), sorry to hear your little ones are still having seizures. We are doing good on that front but am riding the development roller coaster quite heavily. As with William its the messages from Charlie's brain that are having a hard time. I've been feeling down the last couple of days too....probably because Sophie just started sitting and crawling on all fours - just like that out of the blue. She feeds herself finger food and the bottle and is so independent. I suppose it highlights just how much help Charlie really needs.

What can you do ay...just keep chipping away and hope that one day the delay is classed only as mild, rather than moderate, significant and hopefully never severe.

Head up, smiles on, tomorrow is another day :)

Take care everyone.

[will&samsmum]

Have had a really bad couple of days....William keeps having seizures :( . His Epilim dose has been increased but doesn't seem to be working....life really sucks at the moment!!!!!

:gloomy:

[MamaRabbit]

Oh Emma, so sorry to hear William is having a battle at the moment. He's such a soldier.

I've sent you an email.

Much love and hugs,

[MamaRabbit]

Hi everyone - just wanted to post that Charlie my little rabbit has been medication free for 10 whole days with no seizure in sight. So far so good. Call it a coincidence but he seems more focused and more coordinated. In the last 2 weeks he has been sitting on his own longer, his balance has improved greatly and today he even sat in the shopping trolley and held on for the entire hour we were grocery shopping (usually he would tire and flop around).

It's nice to be having a good day.

I hope everyone is keeping well.

[will&samsmum]

Hi Elle...that is just fantastic. Congratulations and I hope everything continues to get better for little Charlie. So good to hear you are having a good day. Big cuddles to you and Charlie.

We are having a really bad day....the seizures started at 3.00am this morning and have ben going all day. He has had a couple of tonic clonic seizures which we have had to use Midazolam for but the other ones are the ones that are scaring me....they are prolonged absent seizures and he is just going into a vacant stare and then turning blue....his body is forgeting to breathe.....I have to keep giving him mouth to mouth and splashing water on his face for him to start breathing again....spoke to his Neuro and he said this can happen with absent seizures and to increase his Epilim by 1ml....he has just had another one and has gone into a deep sleep. I think we might be going for a trip to the hospital if they continue :( . My poor little man.

Hope everyone else is going well.

Take care.

Emma :(

[MamaRabbit]

:hugs: :kiss: :hugs: :kiss:
I'm so sorry to read this Emma. My thoughts and prayers are with you, William and your family.

I know your Neuro is very good, but is it worth seeing another one just for a comparison? They may believe in different therapies, or have seen a case like yours before, or know of a specialist who can help control the seizures. Unfortunately one doctor rarely knows it all, but collectively each doctor knows something that might lead you to someone that can help.

Let me know if you need anything hon.

Big cuddle for both you and William. X

Much love.

[will&samsmum]

Hi All,

Hope everyone is doing well.

William is so-so. His seizures are still happening frequently so that is a bit frustrating. We are seeing the Neuro in 2 weeks so hopefully we will have a new plan of action then. He is working very hard at his therapies every week and is making slow but steady progress.

On a good note.....the Lions Rotary Club raised $3000for William which they bought a Walker for him. It is a wonderful gift which will benefit my little boy so much. It will hopefully assist him to someday walk all by himself :fingerscrossed: There are some really wonderful people in this world.

Anyway just wanted to touch base and let everyone know how William is going and share the wonderful news of Williams shiny red walker.

Take care....big cuddles to all.

Emma

[pegasus]

Fantastic news Emma about the walker. It's always great to see the generosity of others and I bet they'll be smiling all the way with you as William gets some opportunities that are made a bit easier.

All seems well on our front overall, but there are times that I question Aiden's behaviour as he might have been playing in another room (or I've gone to change Kayleigh's nappy or something) and he'll be crying out and I wonder if he's had a minor fit. For example there was a day about two weeks ago when he came stumbling into my room (think I was getting changed) and he couldn't walk straight - came down the hallway and kept walking into the walls while crying. I made the decision (along with the fact that I have concerns about his speech - comprehension seems okay, but he still uses mainly only one word responses, and his size concerns me - put him next to anyother nearly 3year old and he looks about 1).

I contacted my paed and his referral isn't up to date so we went to the Gp last week and got a new referral. I'm thinking of pushing for the MRI. What do you girls think? The last witnessed seizure was end of December.

[will&samsmum]

Hi Veronica,

Lovely to hear from you!!!

I definetly think that you should push for a MRI. You will then know for sure if something is wrong and how you can go about managing or fixing it. Especially if Aiden is still having seizures and weird unexplained behaviour.

In relation to his speech we did a really great course called Hanen It Takes Two and I can highly recommend it. Have you had him assessed by a Speech Therapist???

What does your Paediatrician say about his size??? Maybe he is just small...are you and your hubby small???

Anyway...I totally support your decision to get a MRI done. William had heaps of tests done but the only one that found the problem was the MRI. He has to have another one done this year just to check things are the same.

Good luck with everything and please know that you are in our thoughts.

Take care and talk soon.

Emma :hugs:

[MamaRabbit]

Hi Girls,

Veronica - I too would push for the MRI. Charlie had lots of tests and like Emma's story, the MRI was the only one that picked anything up. At this point they don't see a need for a repeat scan but would consider it in 2 years time if the seizures start up again (as he has remained seizure free for 2 years now) or if his development really stalls or worse stops progressing entirely. Thankfully for now, steady slow progress is still good news. I think a scan can find things that weren't present in the early days of development.

Emma - great news about the brand spanking shiny new red walker. I sent you an email.

[pegasus]

Thanks guys - I've made my appt with paed for Monday arvo - will keep you posted.

Speech - had an informal meeting with a speechie friend and she wasn't too concerned, but encouraged me to go to paed to get full check up. My main trouble is that Jason (hubby) and all his family think I'm being pedantic as hubby's DS 1(my step son) was very delayed at this age and nobody said anything. Think they're also thinking I'm somehow saying he's not good enough - far from the truth - there's no boy I'd love as much.

Heard of the Hanens - good programme

Will keep you all posted

[pegasus]

Hello mummies!

Was feeling a bit guilty that I hadn't posted on here about what went on with Aiden at his paed appointment, but then thought the best way to rectify it would be to post now!

Anyway - Dr suggested we could try Tegretol and also consider a CT and / or an MRI. He said the CT would be quickest, but not necessarily give the best info whereas an MRI can be problematic with how long the child has to sit still.....

We decided to trial Tegretol and return in 4 - 6weeks.

Anyway - in the last 6weeks there have been some amazing steps forward...

Aiden is now toilet trained (during the day - can still have accidents, but usually only when preoccupied playing)

Instead of occasionally using 2word strings and no 3word strings, he's now using heaps of 2word strings and occasionally 3word strings.

Lots less tantrums - still getting a fair few of these, but I put some down to learned behaviour and some down to frustration with not being able to articulate what he wants

Sleeping through the night (he'd been waking throught the night kicking and screaming prior to the meds and amazingly it's only happened once since being on the meds)

Now with all that (review with Paed last week) we agree although he's made heaps of steps forward, he's still got a fair bit to go with his expressive language, but has gone from being about 12months behind to about 6months behind in about 6weeks. Paed still recommending I continue to talk to speechie friends, but no longer talking about the CT or MRI. He figures with the gains that Aiden has made there's no indication he's got acquired aphasia syndrome (apparently an acquired speech disorder from seizures)

Now our next step (along with continuing meds and whatever we're doing with speech and stuff) is to go for bloods to check side effects of meds is to perhaps continue meds for 6months to check longer term effects.

Anyway -thought I'd better let you all know what had been going on. Much as I received lots of resistance from my hubby's family (they all think I'm just too critical of my son and expect too much from him apparently) the positives of him being on medication at the moment far out weigh the negatives.

Hope you all are going well

Love Veronica xx

[suemp]

hi sorry no time for personals about to hit the sack. just a quick update
me: im being weaned off tegretol and staying on keppra only and i got my licence back:yelclap:
ds2 (kane) suffered a 20 min feb convulsion..i was sure i wouldnt have 2 kids that had them. he only 5 months old at the time and it was scary as he went blue and even the ambo was worried as it went for so long and wouldnt snap out of it. wen he put stethescope on his tummy the coldness made him snap out of it and colour returned asap. got a few med probs with ds2 too but will know more by end of month. he not sleepin so we off to riverton sleep school. anyway take care and i come back and read your posts 2morrow
ox

[Merlion]

Well Jess suffers from Febrile Convulsions. She lets us know somehow by being very cranky and screams and cries for a good while before it and normally screams and cries and won't walk and just collapses in a heap after it and sleeps it off. Normally she gives between 3-4 hours before she has a convulsion

She had her first one (under observation for 18 hours) on her 2nd birthday last year in December which was caused by the chicken pox (she got the spots 2 weeks later and her temperature spiked from 36.5 to 39.5'C in less than hour) it scared the heck out of us and a couple and their kids as they were over for a bbq.

Then her 2nd, 3rd and 4th convulsion in 20 mins (had a temperature of 36.5'C at 4:30am and at 5:55am she had a febrile convulsion between us and when I checked her temp it was nearly 40'C) which was never come back with conclusive decision why she had them (she was in hospital for 12 hours under observation).

Her 4th Jess was home with me and her temp was 39.5'C and I called DH as he was on the way home from work and he told me to get her to the hospital. Once we got there we were taken to the ER and while waiting to see a dr she had a seizure right there and then. She was taken up to ward straight away but they never figured out why.

5th was very mild but we were at my parents place and it scared the living daylights out of my parents but we were so calm and relaxed and explained to them what was happening.

Last night we suspected she had another one but we are not too sure. She woke us up screaming and threw up all over herself and refused to walk and was very clingy to hubbie and her temp was 38.5'C which happens all the time when she has a convulsion.

She went to sleep and when she woke up she was back to her normal self which is always the case after 8 hours after the convulsion which is usually caused by a virus. We suspect she has had more than the 6 we have known about and would like to find out more information about them.

[bina]

My son of 20months developed epilespy 8 weeks ago he was hospitalised after a series of fits he had a wealth of tests which are all clear. He has hypotonia so had delays in gross and fine motor skills. He was put on dylantin in hospital which they have just gradually switched to tregratol but unfortuntily this didnt work so he has had many fits both day and in his sleep dam scary!!! He is now back on the dylantin so fingers crossed.
Is anyone using the sleep mat for seizures (alarm) let me know how you find them, I need to get more sleep!!!

Bina

[suemp]

ds2 had another seizure but without a temp. he had his eeg today but i know they are not very reliable

[brookeme]

Hi, I havent read all 21 pages but read a few, my younger cousin has infantile spasms, (I hope thats the correct term), I know his medication is called epilum.
He started having these fits around 6 months old, he is now almost 7 and he is in yr 1, he is going along pretty well, he definately has more trouble than the average kid at school, but his mother is wonderful and puts a huge amount of time into his learning.
Some little habits that he has are like what autistic kids do, repetitiveness and tense arms... anyway he is gorgeous and very lucky to have such a wonderful mother!
It was great to read all of your posts it really puts it into perspective for me cos we take for granted how hard it really is for parents of kids that have such illnesses.
You are all wonderful parents and I wish all of you the best.:hugs:

[pegasus]

ds2 had another seizure but without a temp. he had his eeg today but i know they are not very reliable

I keep wondering about the eeg. Aiden had his 2years ago, but they had to sedate him for a start as he didn't like the electrodes on his head. Think the reason they said about doing the eeg in the first place was because he'd had a couple of seizures without temps.

Well, we're now 4months down the track on Tegretol. He's now sleeping through the night everynight (except maybe one night every 3 - 4weeks), which is bliss, his language has improved from mostly one word, with occasional 2word strings, to mostly 2word strings with occasional 3word strings (and even a couple of basic sentences!!!). I'm still pretty worried about his speech considering he's starting kindy next year so I'm looking at organising some speech to make sure we're doing the right stuff. Hubby and all his family can't see why I want to do it, because he's improved so much that I must just be too critical of him...hmmm....

I still wonder if there is an underlying neurological syndrome - the paediatrician originally wondered about acquired aphasia syndrome (also called something like Landau-Klumpke, or something like that), where the child loses language after seeming to develop normally. When I looked it up they said it's diagnosed via an abnormal eeg. Dr decided he didn't have this as he improved after going on the meds.

There's always so many questions, wish he could tell me more of how it is for him.

[♥Heaven Sent♥]

Hi girls,
just visiting here AGAIN,we had a seizure tonight this time it was ds,he has been pretty sick lately and had temperatures,i gave him some neurofen about 3pm today he was ok then.At about 8.30pm he felt hot again si i gave him some more neurofen he went to sleep i thought he was ok so i put him on the bed next to me and he started fitting,it lasted about 20-30 secs but was so scary :(.He was so drowsy he just layed there which he dosnt usually do,he was shaking(cold) a while after and going a bit stiff.We took him to the hospital and they said he had a febrile convultion :(.I hope he dosnt have one again although there is a chance :(.
Night

[pegasus]

Sorry to hear about Sasha's seizure Jaclyn. Hope it's his one and only and that he's turned the corner now.:hugs:

[Merlion]

Hugs to you hun. I constantly worry about that too as Jessica has seizure without any kind of warning nowadays going to get a referral to see our Paed on Monday if I can

[♥Heaven Sent♥]

Thanks Pegasus,hope your little man is doing ok.How is he going?Had anymore seizures since he has been on his new meds?

[♥Heaven Sent♥]

Thanks Merlion,the doctor said that there is a 30% chance he will have another,when he has more temperatures,i just hope to god that he wont.

[pegasus]

Thanks Pegasus,hope your little man is doing ok.How is he going?Had anymore seizures since he has been on his new meds?

Nope - seizure free since Feb (when he started Tegretol);) :thumbsup:

[♥Heaven Sent♥]

Nope - seizure free since Feb (when he started Tegretol);) :thumbsup:
Thats great to hear pegasus :yes:

[bina]

Hi we had roh in hospital on the weekend as he has had a series of fits over the past few weeks the med levels were far to low. up now to hopefully we will see less he is back on the dylantin which was working before, do any of your children fit during sleep? how do you cope with this and get some sleep your selves!! please help.

Bina
Roh 16.9 05

[Simmy]

Hi.
I've just been searching the internet about what do you do if your child has a seizure during the night ... I stumbled across this thread and I've been hooked for hours! Tears, laugh, education ... and talk about emotional!!
I have one son who has a couple of rare medical issues, both associated with epilepsy - a complex brain abnormality Megalencephaly/Hemimegalencephaly, mainly left sided, and a suspected genetic abnormality - Soto's Syndrome - though formal genetic tests come back "inconclusive"). We've been going through a whole list of medical issues that we are now dealing with, impending epilepsy being one of those. He's had an EEG, lumbar puncture, MRI, heaps of blood and urine tests, x-rays, ultrasounds, yada yada ... to assess the complexities of his conditions - nothing that is uncommon for those subscribing to this thread. At this stage, we've been told that he doesn't have epilepsy, but 'in layman's terms', he's close to the benchmark and we have to be vigilent. Hopefully we won't have to deal with this for some time (they can't estimate when he will have his first seizure). Oh, he's 18.5 months old and no. two arrives on 7 November (caesar). But your thread has been so inspiring and comforting to someone scared about what they will be facing, scared of the unknown.
But its not only the information you have shared about epilepsy that have been so helpful and enlightening ... its your ability to cope, your love and your knowledge on so many different levels. My beloved son has developmental delay and has a long list of specialists, OT, Physio, Speechie, Neurologist, Paediatrician, Opthamologist, Geneticists, etc. We are currently trying to get him to use a mobility walker (doesn't crawl/walk/shuffle), improve his ability to feed himself, introducing sign language and many things mentioned by others. There were so many things I could relate to - it makes you feel that you are not alone in dealing with all this kind of stuff. So many of your stories were so inspiring, so heartfelt and so moving, I thought I'd let you know how incredibly helpful your frankness and emotional messages are.
I'd love to hear the answer to bina's question about a sleep mat. I am scared that my boy might have seizures in the night time and I don't know? How common is this? Do you still use monitors?
Definately will take up a lot of the advice in the thread - books, associations, and loved that poem that was posted some time ago. Would also love to hear an update from Anthony26.
Thanks again.

[pegasus]

Thanks for reactivating this thread Simmy.

Welcome to the group, and to bina as well.

My son is still seizure free, however, we still monitor him carefully and want to wean him off meds as soon as practical. He has a speech assessment on Thursday and I'll be going back to the paediatrician following that.

As for sleep - I've been told that many children fit in their sleep and I suspected that Aiden did many times due to how he woke up (particularly during day sleeps when I was more vigilant about noticing how he was acting) - sometimes a bit floppy - needing cuddles and help for sometimes hours following waking.

The doctors basically told us that there was nothing we could do to prevent a seizure (until he was on meds) and just monitor him (and treat with panadol if need be) following a seizure. Still took him to the dr or hospital if he had one. Not sure about the sleep mats - not sure if they would pick it up. For us, Aiden's seizures were too short to pick up on many things - luckily longest one was about 2min (still seems longer when watching them).

We just continued with the sound monitor as he would usually wail when he had a seizure. Hope that helps

Chat more later.

[tonid]

Hi there, i happened to come across this site by googling and it is very interesting. i have a 2 yr old daughter who had her first 'seizure' at 11 mths, she has had 10 now the last being 13 aug. she has had 2 eeg's, cat scan and blood tests with more to come. We 2 were told they were 'breath holding eps' but i dont feel they are. but as there is no epilepsy in the family they wont diagnose her. We have had video confrence with Dr Appleton, i have been told he is great, also my grandmother has worked with him. DD seems to have them when she hurts herself, starts to cry then eyes roll starts jerking sometimes stiffness of legs or arms, lips go purple or blue, gurgles and on occasions drools when on her side, at end of them she stares straight thru you and is sleepy. we taped the 2nd last one and showed paed therefore are sending for more tests, they say maybe down track for an mri. she is very active totally diff to oldest daughter who is 8, had no probs with her. but it is like have to wrap her up in cotton wool so she cant hurt herself so wont have fit. docs to did tell me could be from high temp but i didnt notice it. but DD has had to many now, was hoping would grow out of them, as docs said prob by 2, but not yet. My main concern is she hits her head on many if not all occasions. So hopefully they find something out soon. Scared of affects if put on meds.
Thanx for listening. Not knowing is worse then having a bad diagnosis, i think!!!
Thanx again
Toni :-)

[MamaRabbit]

Hi Toni - welcome....my 2.5 year old had his first seizure at 6 weeks. After various blood tests and EEG's we finally got some answers from the MRI. I would urge you to get one of those done if you can. DS was on medication for 2 years, he had hyperactivity and irritability with the first lot so they changed him onto another which seemed to be better. He has now been med free since Jan 07 and has not had a seizure since his original lot between 6-8 weeks, thankfully the everyday fear has now disappeared. Of course there is always a chance he will have another but after 2.5 years the worry becomes less.

Hi Simmy - welcome....it was great to read your encouraging words. The beauty of this thread/and the whole site, is that when you are feeling down or alone, there is always someone on the other end who will pick you up. My DS condition is a little inconclusive like yours, we see every clinic available, have every test done. We also do the same therapies, trying sign language and other communication methods, walkers etc..etc.. It's exhausting and at times very daunting and lonely so I am always on the other end of the email if you ever need it.....I have some wonderful friends on the internet who are in the same situation and I value them all dearly. I also had my 2 children close together and there was some anxiety during the pregnancy and soon after, but it is shaping up to be really great. DD is developing so fast and enjoys all the therapy we do and playgroups we attend for DS so I feel they will be great friends down the track.

Hi Bina - I hope everything is good in your camp after your recent seizures and trip to the hospital.

A big hello to Pegasus and everyone else who stumbles into this thread too :wave:

[bina]

Hi All
I havent checked here for ages, we have had a busy few months Roh has been in and out of hospital yes with seizures he had the worst amount of fits ever two weeks ago he had 12 seizures in 36hours it was just yack It all started a soon as we started to down the dylantin which has happened before so he is going to have to stay on it for a while.

Roh is now on four different meds what a cocktail!!! he is very tied needing lots of sleep Which worries me as he is already delayed and this is holding him back further.We are now just on three weeks seizure free which is good.

Rohan is due to have another Mri this week to see if anything has changed in the past 6-8 mounths as we still dont know what is causing the epilespy and hypotonia.

I did try the seizure mat for sleep but we didnt have much luck they either just kept going off as he rolled or just not working at all (it missed a few fits) we have however now got a video monitor which I do recommend it ampilfies the sound so does come on at night if there is a noise or movement, i have caught a couple of seizures on it.it stops me running up the hall to check on him all the time so more sleep all round.

Has anyone experienced this no of seizures most are under two minutes but you do worry about what this is doing to his poor brain. are any of your children on this no of meds, do hope we can get him off one or two soon but they want to see him stable for a while first.

Hope all your little ones are doing ok. love to hear your comments.

Bina
Roh 16.9.05
Liam 29.9.03

[supa_star323]

I'd just like to say hi and introduce myself. My name is tegan and my ds is jacob. When he was 5 days old he got really sick and although a million tests were run, the doctors never came up with any results. Two weeks later he was fine. He has been having partial complex seizures since about eight months, where he just goes blank and "drops" and ever since then he had extremely delayed development. An MRI was done at 12 months which showed his brain to be about 3-4 months smaller than it should be, and an eeg was done at 13 months which showed "some abnormal activity" so he was put onto trileptal. Up until about three weeks ago, he was having hardly any seizures, but now he is worse than he has ever been before. The doctr put him onto lamictal as well as the trileptal, but has said that he will get another eeg and mri don,e but not sure when due to xmas, etc. I kinda feel like the doctor doesn't really care, and I don't know what to do. I know there are people worse off than me and my son, but I just can't understand why this happened to him (no family history on either side) and I don't really know what I can do to help him. I am just starting to feel lost and alone. I don't know anyone going through anything similar to talk to so that makes it harder too.
Anyway, enough whinging. Nice to meet you all!

[bina]

Hi all:)
Welcome Teagan I know how you feel going through all those test it yuck and the seizures and delay in scary my son roh is quite delayed also. have you been in contact with epilespy action ph 1300374537 the have been a great support to me and do do home visits, also the theaphy groups in your area for children with special needs. has your son started any type of theaphy?
The best support is from sites like this as well as others parents that have kids with epilespy and delay, get on to these through ep action or support groups.
The doctors both appear to give you the emotional support you need if you arent happy with the doc you have. get a second opionion i had to.




you arent alone write here to chat or email me at bina att emailme.com.au (bina@emailme.com.au);)

bina
Roh 16.9.05

[Harlequin]

DD seems to have them when she hurts herself, starts to cry then eyes roll starts jerking sometimes stiffness of legs or arms, lips go purple or blue, gurgles and on occasions drools when on her side, at end of them she stares straight thru you and is sleepy.


Just popped in to ask if the drs had considered Reflex Anoxic Seizures in your daughters case?
:hugs:

[supa_star323]

Thanks. I haven't been in touch with any epilepsy organistaions or support groups. I will give epilepsy action a call later this week. How do I locate a support group in my area?

[bina]

Hi Teagan
Check with ep action if they know of any support groups in your area. There arent any in my area but have met some people through meetings with ep action that I can chat to.

Hope you are doing ok my little boy got really sick just before xmas with some weird virus he was in hospital for 6 days his liver count was high so he had to come the epilium and the frisium as these were causing him to be too sedated plus doing liver damage I just hope we can still get good seizure control on the ones he is on.

bina