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Old 11-15-2006, 03:40 AM   #1
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mandy. HB User
please advise me on my sons epilepsy

my son who's now 11 has had seizures since he was 18months old it was only last year the doctors diagnosed him with epilepsy .before a seizure he's very agitated and hard work and grumpy and argumentative then all of a sudden he has a seizure he just like passes out then goes stiff his arms and legs start shaking and his lips go blue (sometimes not always he wets himself) when he comes back round his eyes are all glazed and he seems in a world of his own and doesn't know whats happened he's just really tired and cant find the energy to get up off the floor he can sleep for ages then be all fresh and seem like a different person. I just want some advice really although he has been diagnosed with epilepsy the EEg & ECG came back clear tha specialist put him on epilim and because the results are clear she thinks that he might not have it I just want to know does it sound like epilepsy and is there a reason why it might not be showing up on the tests please help its very worrying and scary thankyou mandy

 
Old 11-15-2006, 05:56 AM   #2
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Re: please advise me on my sons epilepsy

Hi Mandy,
I'm sorry to hear about your son. That must be really tough.
I've had Epilepsy for 12 years now, but it wasn't until I had a gran mal seizure 6 years ago that I actually started reading up on it. And from what I've read, there are many, many types of epilepsy, and it seems like every person with Epilepsy has it a little differently than every other person with Epilepsy. I have heard of a normal EEG reading from a person with Epilepsy. Although EEG's have always come back abnormally, I think there are people on this board who have normal EEG's even though they have Epilepsy.
From the way you describe it, it sounds like your son does have seizures. I'm only speaking from my own experience and from what I've heard from others who have Epilespy.
There also seems to be a very wide range in what each doctor knows about Epilepsy. some doctors say one thing, while some say something else. I've been through three neurologists, and each one seems to have a piece of info or knowledge that the others didn't. Maybe even try bringing your son to an Epileptologist if there are any in your area.

Good luck!

 
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Old 11-15-2006, 06:08 AM   #3
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Re: please advise me on my sons epilepsy

thanks for the advice and information, I don't think there are any Epileptologists in my area but its something I will definately look into. I just want the best for him and to find out if it is Epilepsy so we can get it under some sort of control, He's due to start high school next year and I don't want it effecting how well he does there thanks again your advice is very much appreciated mandy

 
Old 11-15-2006, 07:13 AM   #4
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Re: please advise me on my sons epilepsy

Hi Mandy -
My son, who is fifteen, had three Grand mal seizures this fall. he probably had one last spring. We found him on the floor by the couch in that out of it state, but we had no idea what had happened, we thought he was sleepwalking.

One thing I learned these past few months is that epilepsy isn't a disease. Epilepsy simply means you have seizures. And a good deal of the time, I've found, is the doctor has no idea why a person has them.

Both of my son's EEGs have been normal. One of them was a 24 -hour EEG in the hospital, and it was perfectly normal. What we do know - so far, they only happen when he's alseep and they are definately triggered by sleep deprivation. We tried to avoid medication by making sure he got a ton of sleep, but he had another and we decided there was no choice but to put him on Keppra. Luckily, he's had no side-effects.

I'm amazed the doctors didn't diagnose it until now, after ten years. Is there any pattern to your son's seizures? Do they seem to happen every few days or weeks? Has he had any at school?

Take care.

Mimi

 
Old 11-15-2006, 07:49 AM   #5
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Re: please advise me on my sons epilepsy

hi mimi ye he has had a couple at school but luckily the head teachers mum has seizures so she knew how to deal with it. He was having say 2-3 a week until he was put on the epilim now there less frequent and he has only one major one a month and just like trance and muscle jerks roughly once a day so the medication is controlling it even if it isn't epilepsy. The doctors kept trying to say it was some sort of attention thing but believe me its not if he could act that out he deserves a oscar! They are going to put him to sleep so they can do a deep EEG hopefully this will show something up so we can get it sorted I hope so mandy

 
Old 11-16-2006, 06:31 AM   #6
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Re: please advise me on my sons epilepsy

Depending on the patient, Epilim can make some people groggy and being able to concentrate can be a problem due to "a cloud in the mind" is the best way to describe it. Epilim, known as Depakote in the US, also causes weight gain and hair thinning. So if perforance in school drops, tha may have part to do with it.

--Travis

 
Old 11-17-2006, 12:00 AM   #7
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Re: please advise me on my sons epilepsy

Quote:
Originally Posted by Travis from MN
Depending on the patient, Epilim can make some people groggy and being able to concentrate can be a problem due to "a cloud in the mind" is the best way to describe it. Epilim, known as Depakote in the US, also causes weight gain and hair thinning. So if perforance in school drops, tha may have part to do with it.

--Travis
hi Travis, The epilim I dont think is right for my son. Since he's been on it his school work is suffering he was a star pupil top of the class. Now he finds it hard to concentrate and sometimes daydreams a lot and misbehaves he was never like this before. Plus he put on over a stone in weight in just 8 months. I took him back to the doc and she decided the med is not for him so is slowly changing him from epilim to lamotrigine 35mg tablets do you know if there are any side effects off these tablets that i need worry about? Hes due to start high school next year and I just want him to do well again before he starts thanks travis
mandy

Last edited by mandy.; 11-17-2006 at 12:03 AM. Reason: missed something out

 
Old 11-17-2006, 09:22 AM   #8
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Re: please advise me on my sons epilepsy

You'll most likely get the 100's (orange) 150's (yellow) or 200's (blue) pills (those are how they appear in the US anyway) after getting ramped up.

If a RASH shows up down the road on Lamictal (Lamotragine) CALL RIGHT AWAY!! The rash usually appears on the joints (wrist, elbow, back of knee, etc..) and indicates an alergic reaction. This should have been in the printed material provided with the medication. Thats the main problem with the medication that I recall.

In my early 20's I was on 800/day of Lamictal and it was not working for me; blood tests were hardly registering it. So needless to say I was not on it long.

--Travis

 
Old 11-17-2006, 10:09 AM   #9
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Re: please advise me on my sons epilepsy

thanks for that Travis i'll look out for the rash cheers for the info mandy

 
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