Frontal lobe seizures...

[MumOfTwoBoys]

That's the diagnosis my son got today...:crying: I am all over the internet reading everything I can about it. Could anyone please recommend a reliable site(s) about seizures and epilepsy? There are hundreds of sites but I want a reliable one.

Thanks... :gloomy:

[MamaRabbit]

Hi Anna,

I'm pleased you got in to see Dr Ryan, she is very knowledgable and straight to the point. Please be sure to send her the Walmsley family's regards when you see her next :)

I'm so sorry to hear about your son's diagnosis, without sounding "blase" about it all (is that how you spell it?) but once you have gone through your panic and grieving process, searching the internet and trying to come to terms with everything you will come to see that things could be worse. Well that is what happened to me anyway!

My son was diagnosed with an epilepsy related condition at just 6.5 weeks of age. At first panic set in and I was devastated, I searched every available site on the internet and still couldn't get enough info. Slowly things started to settle. Charlie was put on medication and the days since the seizure turned into weeks, months and now we are coming up to almost a year and a half and counting. The more appointments we had with Monique the more we understood and the more days that passed the less I watched and waited for a seizure. Since our diagnosis we have also come across a number of friends and children who have epilepsy and we never knew they had it before. So in our eyes the outlook became positive. He will be trialled off medication once he has been seizure free for 2 years (in around 6 months time), but if he has to stay on it to prevent the seizures so be it (there are many many types of anti-epileptic medication so you can find the one that best suits the individual).

A book that really helped me is titled: Seizures and Epilepsy in Childhood - A Guide. Third Edition by John M Freeman (MD) I think you can buy the second edition in Australia, perhaps even through the hospital's library. The third (and most recent) edition I had to get from www.amazon.com. It explains everything - from understanding how the brain works and why seizures occur, to what the different tests mean, to treatment (both medical and dietary/alternative) and surgical procedures and finally to coping with epilepsy and just how "normal" a life one can have. It is written by the doctors for the parents/family of a child with epilepsy. I have found it to be very good.

There are some reputable sites on the internet, but you will also find alot of horror stories, be sure not to take too much notice of those stories as they are a one in a million and very unlikely to relate to your son.

Please be sure to drop me an email anytime if you want to chat (elenawalmsley@hotmail.com), I totally know how you are feeling right now. There are also loads of lovely people on this site that have similar conditions and it's really helpful to swap stories.

Like the lady said in the previous post, your son will probably undergo a whole host of tests and medication trials. It's terrifying but you soon get a grip on things and life returns to normal. They know what they are doing.

Take care,
Elle x

[suemp]

does your son have petit mals or grand mals (grand mals being the ones most people assosiate with epilepsy where your son would go into a fit on the floor, and petit mals are like abscence seizures where you go off in your own world but generally appear quite normal to onlookers)? i have epilepsy and would gladly answer any question.

[will&samsmum]

Hi Anna,

My son was diagnosed with a rare brain condition which has lead to complex epilepsy when he was 10 weeks of age.......he is now 2. He has been on anti convulsant medication from the age of 10 weeks old. I am sorry that you and your family are going through this. It is totally overwhelming at first but I assure you that it does get easier as time goes on. My son William has all types of seizures but the medication he is on has helped to control them alot. We are members of Epilepsy Queensland and we find them a wealth of support and information. If you go to epilepsy australia website it will show you where your local epilepsy group is...I see you are in Victoria so I know they have a really good site there. Your son will be put through lots of tests but trust in your Doctors as they know what they are doing and they need to do these tests to determine what sort of treatment plan is best for your boy. I see Elle has been in contact with you....she is a wonderful person and has helped me through some very tough times. Suemp is also full of very good knowledge and advice on epilespsy. There is another thread we all talk on in Serious health issues called Infantile seizures and childhood epilepsy.....you will find some wonderful ladies on that thread who really know what you are going through and are always there to talk or just listen. Please feel free to email me at anytime (lindberg@aapt.net.au) as we have been dealing with epilepsy for 2 years now and have built up heaps of knowledge on the topic. Good luck tomorrow and what I have found is helpful is to write all my questions down and take with me because I tend to forget when I am in with the Doctors. Try and stay strong but I know how heartbreaking the whole experience is.......someone told to me once that Special children are given to special mums.......that has helped me through some very dark times.

We will keep you in our prayers and be thinking of you tomorrow.

Big cuddles to you and your little boy.

Talk soon.

Emma xo
:hugs:

[MumOfTwoBoys]

Big thanks to everyone who responded to my post. It is SO comforting!

I'll try to answer all your questions:

aijent -
our paediatrician referred us to a paediatric neurologist. The earliest appointment I could get with him was 31 August. So I just dialed Royal Children's Hospital and asked for a neurology department. Then I explained that my son was referred to a neurologist but the waiting list is extremely long and his condition worsens by the day. So I asked for the first available doctor. I simply got lucky to get an appointment in 2 days time. But I still believe that even without Dr Ryan starting her practice in Melbourne I would've still got an appointment at RCH earlier than 31/08/06. Then I just phoned my paediatrician and asked her to fax another referral directly to RCH neurology.

suemp -
my son has the frontal lobe seizures. These are not the general ones but the ones that start at a particular part of the brain, in his case in the frontal lobe. His case of epilepsy is called Frontal Lobe Epilepsy. I found many references to it on the net.

elleandchalie -
thanks for the kind words and your support. I really need it now. Special thanks for the book reference, I'll try to get one.

willianstonesmum -
thanks for your kindness and support. I think if my son's condition doesn't improve I will try to contact an epilepsy support group in Victoria. I'm afraid I won't be able to cope by myself this time...

In general, my son already had one EEG done but it didn't show much. Our paediatrician warned us that EEG is not that accurate. Dr Ryan suggested doing another EEG, this time an ambulatory one which should capture the seizure itself. Has anyone gone through this procedure? How do you manage to make you child wear the thing all the time? What about going to school?..

Thanks again everyone.

[suemp]

i had an eeg done which showed nothing than i had a sleep deprived one which is only done on adults as its too hard to keep kids awake all night. my son also had an eeg done as he had seizures wen little. the things that stick to your head generally stay there unless your child is pulling at them so they try and distract your child ie with books etc. (not sure if the ambulatory you are talking about is the one where they put elctic pulses to induce fitts. i have also had that done and its slightly uncomfortable , does not hurt just feels a bit odd.
they can also do mri (that machine that you lay on a bed and go into a tunnel ) you may have seen one used on one of the many medical shows on tv. it is ok but not good if you are claustrophobic (like me!!!:o )
as far as school there are many kids who attend school with epilepsy. what i would do is have a sit down talk with his teacher/s and explain his condition and what to do if he should have a seizure. my son used to get seizures everytime his temp rised even the slightest. (had about 10 fits in all) and i informed the day care centre. in my oppinion they should know about febral convulsions and have there first aid cert to deal with it but the way they dealt with it was to panic and every time he was flushed (even from running around) i would get a call to pick him up as they did not want to deal with it. so the more informed you can make his teachers the better. i dont know what frontal seizures look like but when i have a petit mal (which is the name of a seizure that you dont fully pass out with) i can often continue doing what im doing. you just feel a bit spacey. it certainly never interferred with my school work.
good luck with it all :hugs:

[MamaRabbit]

Hi Anna, I've sent you a private message with some info about the testing we had done.

Cheers,
Elle

[will&samsmum]

Hi Anna,

William had numerous EEG's and not much was picked up at all. the only thing that diagnosed his condition was a MRI. I highly recomend it as it picks up the problem and then they can start treating it. William had heaps of tests EEG's, Cat Scan, Lumba Puncher, heaps of blood tests and all sorts of Genetic Tests but the only thing that found the actual problem was the MRI. I am so glad that you have an appointment so quickly....good on you for pushing for it. One thing I have learnt is that sometimes you just have to be that extra bit forceful to get things done inthe Childrens Hospital......not that I could ever complain as the Royal Brisbane Childrens Hospital is just fabulous. If you contact the epilepsy support group in your state they actually have a team that goes out to schools and explains it all to the kids in their terms....they also have childrens books and literatue that they can give to the teacher to read to the class......the character is called Little Pos.......it is about a little possum who has seizures and how his bush friends help deal with it....it teaches the kids what to do if their friends suffer seizures....it is very cute and makes it not a scary thing for the kids to deal with. There also is a Little Pos Club for kids to join who have epilepsy...makes them feel just that little bit extra special. Don't ever feel alone.......you are not alone and do not have to cope by yourself....if you ever need to chat or a ear to listen to I am here.

We had a bad day today......William woke up at 4.30am and had a really severe tonic clonic seizure and we have spent the day in hospital. He is OK now but very tired out......I am exhausted and extremely emotional.

Good luck at your appointment and please know that you are in our prayers and thoughts.

Big cuddles to you and your family.

Take care and talk soon.
Emma