Epilipsy - HELP! What would you do?

[happysammy]

I have a few questions that need someone from the outside looking in to answer..... I will give you the bakground info first then ask the questions:

My husband -

-His sisiter died of epilipsy at age 12, she had a fit that she never came out of. (it was claimed the DPI needle, i think its the 1st imunisation gave her the epilipsy) She had a rare 1 in 5 strand that couldn't be cured.

- All his uncles (6) had epilipsy untill around age 12 and they eventually grew out of it

- All his male cousins have epilepsy the eldest is 12 and he hasnt grown out of it

- one of his female cousins has epilipsy she is aprox 15 and also has autism.

Me -

- Had 3 seizures after DPI needle

- No known family history of epilepsy

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Before my husbands sister was diagnosed with epilipsy aparently there were many trips down the the brisbane RCH (6 hours away for them at the time, especially by helicopter as they lived rural) Doctors sent them home each time for aprox 2 years telling them there was no signs that she was having seizures, it was not untill she was in hospital for a week with a monitor on her that the seizures came up on the computer. It took 2 years for the doctors to find a trace of a seizure.

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My son was born 2 months premature, he was born breathing needed no oxygen put on weight and was out of hospital on one week, he had no problem about 3 months old. My husband and I went out (our 1st night out) and we got a phone call from mum telling us that our ds was in the ambulance and wasnt breathing, we rushed to the hospital, he was getting resusitated, he was in hospital for a bit over a week, and stoped breathing on serveral occassions, by the end of the week these 'episodes' stopped he was tested for epilepsy and seizures and we were told by the doctors there was nothing to worry aout. One nurse even tried to tell me I was imagining it. About 2 weeks later my brother then 16 said that ds was shaking and jerking in the pram, we took him up to the hospital and got told by the doctor that he had not had epilepsy even though there is a family history that doesnt mean anything. He continued to say that we were over reacting and that we shouldnt automatically think that everything wrong with the baby is epliepsy (which was not what we were thinking) a couple more shakes happened and the same response from the doctors. Eventualy I just ignored these incidents and continued life thinking that my son definitly was having no seizures and that I was just over reacting. It was not untill my son started walking i realised there was a major problem, for 6 weeks in a row ds ended up in hospital with concussion. he just kept hitting his head without a sighn he would just fall over and bang his head, only the 6th week, i got talked to by the nurse and doctor saying that basically i wasnt caring for my son properly and why was he up at the hospital for the th time. I was beside myself :crying: A week later we went down to the bech and had fish and chips my ds(18 months by this stage) was sitting on a bench seat eating an ice cream when suddenly the ice cream fell out of his hand and then next thing he just fell off the perch. He was knocked out stone cold, we called an ambulance and he came to just as the got there, we went to the nearest hospital(we were aprox 1 1/2 hours away from home waited there for around an hour in a coridor because the hospital was packed, we then took him to a hospital closer to home( a private one) we got in straight awy they said he was fine. So we took him home about 4 hours later ds started severely vomiting, we then took him to the brisbane RCH(the hospital that questioned my parenting, i was too scared to go to them in the 1st place because i thought they would put child services on to me) The peadiatrician said he had concussion again, but insteaed of scruitinising me for it he said there has to be a problem because kids dont just pass out for no reason, he then has us booked into a neuroligist at the first sezuire clinic that day.

We went to the neurologist told her all of this and she was disgusted by what the doctors told us previuoslly, and that no one had picked it up earlier.
They did some test on him and trued to bring on seizures but couldnt bring one on, we realised through our appointment that our son was having absent seizures(my husband had been saying this to doctors for 18 months and they bonned him for it) the neurologist said that it appears throgh family history(she checkid it all out) that he will have an extreemly high above average chance of having epilepsy, she said she wanted to medicate him that day. We decided against it untill the sezuires came up on the computers...........

My questions to you (if you got through all of this)

1. would you medicate ds given that his aunty had epilipsy but took around 2 years to diagnose it i.e would you nip it in the bud first rather than wait for a positive sign.

2. explore it a bit more, i went to my gp and asked for a referal to a dietician that specialised in childhood epilipsy and he said no, that a diet is irelivent to a childs ceziures (MY husband says that it untru)

3, who would no more do you reakon a man who has been around epilipsy eah day of his life for 12 years or a doctor????????? I don't know who to listen to at the mont dh or the doctor????:hair:

and

4. would you take legal action, I am seriously thinking about it because of the way me and my husband were treated by doctors, my husband kept sayin all along that he was having absent seizures and drop seizers, all the doctors and nurses(untill recently) scrutinised us for saying it and said we were imagining it was happening. The made us feel like bad parents because our son had concussion so many times, they just pointed the finger inseatd of finding the cause, each time ds had a seizure i would say to dh its nothing to worry about dh would insist on taking him to tyhe hospital and the doctors would say it was nothing, this in the end caused us to seperate until just recently when he has been diagnosed with these problems(we realised we really need each other to get through) I feel most of that was as a result of our treatement by doctors and nurses at the rch.???????

I am sorry to be sooooo long!!!!!! I need dome inputs because everyone that is family and friends are very biass about it due to their involvment.... what do you think? i would really appreciate any input! i'd also like to hear about other people that have had problems with diagnosing their children with epilipsy???:angel:

[Mell]

Wow, that is a hard one.

I am not sure what i would do in your situation. I would want to start to manage the epilipsy but i would also need to know 100% that it is epilipsy before starting med's.

I would definitely take him to a dietician and start on a eating plan.

As for legal action, if you have the time, money and energy, go for it, but i think i would rather spend the time, money and energy on my DS and on his health.

I hope you get it all sorted out soon :hugs:

[aardvark]

I'd agree that diet is irrelevant.

As for doctors - there are Doctors, and there are doctors iykwim.

Your DH would have better knowledge in some respects than some of them, I'd say, but not the ones who are on the ball, and certainly not more than a paediatric Neurologist.

As for medication, they will be cautious, as some of the meds can play havoc with the liver. So on that basis, if they say medicate, I'd be inclined to do so, especially with the family history, and your child's history too.

My DH has epilepsy, and DD#1 was having funny spells at age 15 which on an EEG "could be epileptic in nature" - but they seem to have stopped, and Lindsay Smith the Paediatric Neurologist at Monash was in no great hurry to medicate her, although I would happily have done so at the time.

[kiwibird27]

MEDICATE, MEDICATE, MEDICATE, Depending on the type of seizures he could seriously hurt himself, and given the family history I would definately medicate.

In relation to the hospital, I would call and book a meeting with complaints department or the patient friend and make a formal complaint. If this seizures continue u may need that hospital to help so u need to sort this out so u feel comfortable again!!!!

Most paediatric neurologists are fantastic so am totally surprised!!!!

[happysammy]

Most paediatric neurologists are fantastic so am totally surprised!!!!


We never got through to the neuroogist intill just recently as the doctors never believed us. Once we got to her and him(he has two looking at him) they have been brilliant even giving us their after hours numbers etc.

i agree with the talking to the hospital about the problem, i think it too was a silly idea to think about legal action, it just upsets me so much and angers me about the way we were treated and how i started to doubt myself and my mothering instincts based on some textbook doctors and nurses.

i still am in a dilema mostly about weather to take note of my husband or the doctors, cause we have a few tellin us all different stuff. dh has dealt with his sister who would have up to 30 fits a day and he was her main carere when the parents wernt around so he has had plenty of years of 1st hand experience????

The reason i said about the diet is because dh's sister aparantly had to have a strict diet because they could predicit seizures if she ate certain foods...that is what i was tryimng to get at maybe working out if we could predict the seizures and stop what itw as that is bringing them on?

:xmastree:

[kiwibird27]

Maybe ask for a case conference...thats where all the people involved get together with u guys and discuss all the options, and make a plan for the future, Have had a few for my daughter and they get everyone on the same page, moving in the right direction!!!

[PunkyDiva]

Talk to your Neuro about the diet. There was a true story made into a movie about an English gentleman who came up with a particular diet after 30 odd years of epilepsy and never suffered a seizure again. Sorry I can't recall the name but they use it in the UK hospitals so sure the Neuro would know about it. We looked at it for our son but although it may cease seizures it is very poor nutritionally and extremely strict. I'm def keeping it in mind once he has grown up though as the meds def have a lot of side effects.

I won't badmouth him publicly but Dr Lindsay Smith would never feature on my list of desirable people to be seen by, despite his apparent credentials.

The Epilepsy association can offer great advice and support so maybe contacting them would help.
http://www.epilepsy.org.au/

[MissyMoo]

Hi

I had my first seizure when I had my Whooping cough vaccine. I will reply to this more when I get home tonight from work so I can read the history there.

I do not have epilepsy, I have a Movement Disorder I spasm and flail around looking like someone with Cerebral Palsy I am awake fully and try to control myself if I need to. It took 11 years for me to go on medication, my neice is currently having seizures just before she gets a fever, my sister wil not medicate unless it becomes a problem - ie if she went unconcious during them. I take meds because I get up and down and this is enough to trigger a spasm, I'm embarrassed in front of customers!

It is Dystonia, I have paroxysmal dystonia, its in the family but just me has the 'big case'! wemove.org is great and also the brain foundation I addition to epilepsy foundation - who are researching me. My Dr is from Monash in Melbourne Professer Mark Cook.

Anyway gotta get back to work, will get to you tonight!

[EsSjAy]

:hugs: to you Epilepsy is a horrible disorder to live with.. Not only for the sufferer but for the family as well... My partner suffers from epilepsy... He was diagnosed when he was 15 as 'petit mal' he has unfortunately graduated to 'grand mal' after having more than 2 seizures this year..

Sorry for going on about myself...
My partner is convinced that diet, health, and sleep have a major influence in the severity of epilepsy... He has gone on a major fitness diet and is the healthiest he has ever been.... He is on epilem (quite a high dose) and he has not had one inclining of an episode... He will normally have 'auras' drink a litre of water and have some sugar and go straight to bed... Generally this fixes things, but if it doesn't we know to go straight to the hospital as a seizure is likely as this has been the case with the last 2...
Anyway since looking after himself and doing all of the right things he hasn't had an episode for 6 months and that is excellent for him...
He is seeing his doctor to hopefully get the amount reduced but believes he will always need medication....

I think you should medicate hun, in saying that your husband is right about diet... I am convinced of this also...

And as far as the hospital is concerned, definitely put your complaints in and take it further... We put our lives and the lives of our children in these peoples hands.... Not to be judged or scrutinized and ignore an 'obvious' problem.... I cant believe what you have gone through.... I think you have an excellent case.... Go for it....

All the best... :fingerscrossed: good luck with everything x x

[metalhead713]

whew.. this is a doozy.
1. would you medicate ds given that his aunty had epilipsy but took around 2 years to diagnose it i.e would you nip it in the bud first rather than wait for a positive sign. Yes, medicate early. Before it becomes a big issue or somthing bad happens (like ds getting a serious injury from a sezuire). My sister had epilepsy when she was 2-3, only a mild form, and the medication did make her very agravated, she was only 3 and even broke a mirror once due to her anger.. so its obvious why people would prefur to wait to make sure epilepsy is the real problem.. but I am sure if my sis hadnt had the medication she would have have worse issues, she has now since long grown out of her epilespy.

2. explore it a bit more, i went to my gp and asked for a referal to a dietician that specialised in childhood epilipsy and he said no, that a diet is irelivent to a childs ceziures (MY husband says that it untru) Im pretty sure diet is irrelivent to a sezuire, but im not 100% sure on that.

3, who would no more do you reakon a man who has been around epilipsy eah day of his life for 12 years or a doctor????????? I don't know who to listen to at the mont dh or the doctor????:hair: listen to both sides, weigh up both sides and make a decision based on what you think is best. thats a tough call though

and

4. would you take legal action, I am seriously thinking about it because of the way me and my husband were treated by doctors, my husband kept sayin all along that he was having absent seizures and drop seizers, all the doctors and nurses(untill recently) scrutinised us for saying it and said we were imagining it was happening. The made us feel like bad parents because our son had concussion so many times, they just pointed the finger inseatd of finding the cause, each time ds had a seizure i would say to dh its nothing to worry about dh would insist on taking him to tyhe hospital and the doctors would say it was nothing, this in the end caused us to seperate until just recently when he has been diagnosed with these problems(we realised we really need each other to get through) I feel most of that was as a result of our treatement by doctors and nurses at the rch.???????

YES. This is soo stupid. They are very unprofessional for not looking into this, they are professionals and should have immediatly recognised somthing was wrong, not just pointed the finger. Something could have been done about this a long time ago. im sure the doctors that did pick up on the problem, will back you up.

[jaysmommy]

Hi,

I'm sorry to hear about your son and the way you have been treated. I don't know very much about epilepsy at all but having just read your post, the eposide with the ice cream that you desvibed sounds VERY much like what happened to my son this weekend and he's been diagnosed with RAS, read the post on Reflex Anoxic Seizures and see if anything there sounds like your son's problems, it may not be that but this condition is commonly misdiagnosed as epilepsy, and the trigger for the seizures can be many things-cold lollies being one of them.

Just thought i'd post this in case you doc has not yet ruled out RAS as i'm told a lot of docs don't look for this condition as it's so similar to epilepsy which is far more common.

Good luck :thumbsup:

[SimplyMum]

Ok, I didn't get to read all of the posts as I'm at work. But....

I have eplilepsy. First of all, there's lots of different kinds. I used to know someone that under allot of stress would hulicinate but not remember anything.

My Dad has fits when he is tired and not had enough sleep. He refuses to go and see a dr or take medication. This is very dangerous as he still drives and works on cars all day.

I have something called Juvenile Myclonic Epilepsy (sp?). Mine is more when light blinks I spasm or jerk. It only usually lasts a second or 2 so I can usually snap back before anything happens. It has caused me to have 2 accidents. I couldn't take the medication while pregnant so I couldn't drive (worked out good because I didn't have my license).
Now, because I'm going to a different dr, I have to go back to the nurosurgeon for tests again to go back on medication. This is all well and good and I really will do it soon but it's finding the time and money.

Anyway, I nor anyone I know has ever found the diet to effect epilepsy. I really can't see how it would. But than again, there is lots of different types of epilepsy so it may be possible.

In any case epilepsy is definately hereditary, although it can be caused by a hard knock to the head, more common in males and children can grow out of it.

IMO it should definately be medicated. Especially if there is obvious cause and reason that he has epilepsy, which it sounds like there is. Could you give both a try. Left untreated, it could develop and result in a very severe seizure (there is a term used for these seizures) and have bad consequences.

Maybe ask the dr what the side effects of the medication is, what would happen if someone took the medication that didn't have epilepsy.

[happysammy]

Hi,

I'm sorry to hear about your son and the way you have been treated. I don't know very much about epilepsy at all but having just read your post, the eposide with the ice cream that you desvibed sounds VERY much like what happened to my son this weekend and he's been diagnosed with RAS, read the post on Reflex Anoxic Seizures and see if anything there sounds like your son's problems, it may not be that but this condition is commonly misdiagnosed as epilepsy, and the trigger for the seizures can be many things-cold lollies being one of them.

Just thought i'd post this in case you doc has not yet ruled out RAS as i'm told a lot of docs don't look for this condition as it's so similar to epilepsy which is far more common.

Good luck :thumbsup:

Thanks very much for that jaysmummy, at his next appointment i will ask them about it! I will do a little bit of reasearch into it aswell! Thanks so much for letting me know about it!

[happysammy]

Ok, I didn't get to read all of the posts as I'm at work. But....

I have eplilepsy. First of all, there's lots of different kinds. I used to know someone that under allot of stress would hulicinate but not remember anything.

My Dad has fits when he is tired and not had enough sleep. He refuses to go and see a dr or take medication. This is very dangerous as he still drives and works on cars all day.

I have something called Juvenile Myclonic Epilepsy (sp?). Mine is more when light blinks I spasm or jerk. It only usually lasts a second or 2 so I can usually snap back before anything happens. It has caused me to have 2 accidents. I couldn't take the medication while pregnant so I couldn't drive (worked out good because I didn't have my license).
Now, because I'm going to a different dr, I have to go back to the nurosurgeon for tests again to go back on medication. This is all well and good and I really will do it soon but it's finding the time and money.

Anyway, I nor anyone I know has ever found the diet to effect epilepsy. I really can't see how it would. But than again, there is lots of different types of epilepsy so it may be possible.

In any case epilepsy is definately hereditary, although it can be caused by a hard knock to the head, more common in males and children can grow out of it.

IMO it should definately be medicated. Especially if there is obvious cause and reason that he has epilepsy, which it sounds like there is. Could you give both a try. Left untreated, it could develop and result in a very severe seizure (there is a term used for these seizures) and have bad consequences.

Maybe ask the dr what the side effects of the medication is, what would happen if someone took the medication that didn't have epilepsy.

I am not sure of the side effects as I havent asked but I am awre that it makes them quite doey like they just sit there, they dont muck arounjd that sort of thing. DH says that his sister couldn't eat pumpkin because each time she did she would have a seizure weather this is psycological i dont know, and they had to makesure she had lots of fibre in her diet because if she bacme coinstipated she would have really bad ones that would last longer than 6 minutes requiring hospitilisation. he says that the diet helps controll whats known as "predictable seizures" where you know something willmake a seizure happen. but as i just said again it could all be psycological maybe???

[suemp]

i too have epilepsy and it was misdiagnosed for years. i dont hold grudges as it is apparently very hard to diagnose unless someone has the typical "seizure" that everyone associates with epilepsy. you know the jerking on the ground etc
both my sons have seizures. my ds1 had febrile convulsions at the slightest temps and ds2 has moments where he looks blank and his jaw shudders. they too didnt believe me it was seizures as it wasnt "typical" seizure behaviour but they gave him an eeg anyway and it was abnormal so we are awaiting an mri
my epilepsy is just where i zone out . i can carry on as normal but it feels like im in a dream state and that my head is caving in. it is not dangerous but i hate the feeling and shouldnt have to feel it wen there atre meds to stop it. i was on tegretol and it didnt work so they changed me to keppra and wat a change for the better that was. i still occaisionally have "episodes" in shopping centres etc but its not daily any more.
there are drugs that can make kids abit dooey but they are usually only for kids who have grand mal seizurres. every tablet is different and can be taken at different strenghs so it pays to test and trial things out.
i have heard of the diet, in fact a girl in my eldest sons class is doing it but im a bit old school and tend to trust medications first. even though it may not appear to be dangerous now wat if he has these episodes in class later on and wets himself in front of everyone or has one in the middle of crossing a road iykwim. and as i said they arent pleasant so id try the meds
good luck

[PunkyDiva]

Ketogenic Diet www.epilepsy.org.au/treatment_ketogenic.asp (http://www.epilepsy.org.au/treatment_ketogenic.asp)

[jaimmdee]

My son has a severe type of cp resulting from his premature birth with seizures (50% of kids with CP have seizures). I wouldn't personally medicate and would instead try the specific carb diet. http://www.pecanbread.com/ . It is easier to follow then the ketongenic diet.

It is used for a variety of ailments but I know of quite a few kids that have been seizure free following an introduction period of the SCD. Not guaranteed for all types of seizures but worth the effort.

I'm sorry to hear about the way that you were treated by the Doctors. We have similar issues with our son and the hospital docs (what would we know - we are just the parents). Fortunately we have a paed that does listen to us and will advocate for us if needed.

[PunkyDiva]

J...that diet looks interesting but seems specifically for Autism and healing of the gut, rather then the specific anticonvulsant effect required for epileptics.

[happysammy]

Thanks guys for all your help! I am going to try the diet idea untill his appointment but I will probably go with the medicating because I dont want anything bad to happen to him. Ready all your opinions has really helped me see different points of views! thanks very much guys!

[veve]

1. would you medicate ds given that his aunty had epilipsy but took around 2 years to diagnose it i.e would you nip it in the bud first rather than wait for a positive sign. Yes, medicate early. Before it becomes a big issue or somthing bad happens (like ds getting a serious injury from a sezuire).

I would be VERY VERY careful with medication - some epilepsy meds have some seriously scary possible side effects .. (and some .. as basic as epilim .. can cause skin irritation and itching .. enough to drive some children balmy) - please consider seeing more medical professionals FIRST ..

2. explore it a bit more, i went to my gp and asked for a referal to a dietician that specialised in childhood epilipsy and he said no, that a diet is irelivent to a childs ceziures (MY husband says that it untru)

I've personally never heard of a correlation between diet and seizures - but .. who knows - there may be some connections. That possibility .. is another reason to not medicate immediately ..

3, who would no more do you reakon a man who has been around epilipsy eah day of his life for 12 years or a doctor?????????

neither - both are completely fallable - every person's seizures can be different - show in different ways, and be 'set off' by different variables... I do think however that you need to follow your gut - if your GP isn't listening .. see more and more GPs till SOMEONE agrees to refer you - even small seizures can be documented with scanning tools .. push until someone listens .. epilepsy can alter your life - its not a condition to be taken lightly (as you would know with your family background)...


and

4. would you take legal action,
I wouldn't myself - however I would definitely make a formal complaint to the hospital about they way you felt you hvae been treated.

Next time you go to a GP - DOCUMENT what you hvae written above - about all the family history .. and dot points listing the seizures that you believe your child has had already. Often doctors will respond more postivitely if you go in with a specific plan ... (I allllways take a list .. :laughing:) ..

good luck :hugs: I had seizures as an infant - but they stopped by themselves. PLease - remember that every seizure has the potential to damage the brain.. insist on being taken seriously by medical staff .. :hugs:

xx
Jen

[jaimmdee]

J...that diet looks interesting but seems specifically for Autism and healing of the gut, rather then the specific anticonvulsant effect required for epileptics.

As I said, my son has seizures (and is classified as epileptic) and this was suggested to us by another mum's whose son has seizures and it has worked for both of our kids. It is used for a variety of different conditions & there are many different web-sites on it and the conditions it treats. I gave that web-site as it is the one with the best information on the diet. It is only a suggestion. Take from it what you want. There are many different types of seizures/epilepsy and it may not work with other types that aren't related to conditions such as CP or autism. I don't know.