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Anyone with any knowledge/experience of epilepsy help please.

(5 Posts)
werewolvesdidit Sat 05-Jan-13 22:03:35

Back story: DS1 is 7 - he has had epilepsy virtually from birth. His seizures are brief tonic clonics and, apart from one just before diagnosis, all nocturnal.It took us 4 years to get a diagnosis despite several referrals to pediatricians. Finally he had a seizure in the middle of a road and we got a diagnosis of epilepsy (which I had thought for years anyway). All his tests are clear and he is bright for his age. After a horrible time on Epilim he has been on Keppra and seizure free for just over 2 years with no noticeable side effects from the keppra.

Anyway, we are now in a situation where the paeds want us to wean him off the drug. We had a recent meeting where a LOT of pressure was put on us and in fact the consultant was very angry with us for saying we didn't want to take him off the keppra.

Our reasons for not wanting to withdraw the keppra are as follows:
1) his seizures are silent and evidence free so he would have to sleep between DH and I for the next 2/3 years to keep him safe (his seizures are too brief for a monitor and too silent for a baby monitor)
2) Even if the seizures stopped then, there is a chance they'd come back in puberty - we wouldn't know and then he'd be at risk from sudep
3) I had a friend who had severe brain damage from a seizure and I don't want to risk anything happening to him
4) he is adamant that he doesn't want to come off the meds and cries every time I mention it

I hate keeping him on a strong medicine but I feel that I feel that in his particular case he can have a much more 'normal' life on meds than without. The consultants rubbished everything we said and are unsupportive. We can't afford to go private. The thought of taking him off his keppra and risking his safety is making me feel physically ill.

I just wondered if anyone had any advice. Thanks x

PS I copied this from chat as I thought there might be people on there who had weaned their DC and no longer came on here.

newlife4us Tue 08-Jan-13 18:15:31

Hi.

My daughter was on various drugs for a number of years, including Keppra for a very brief period. She was seizure free for a couple of years and came off epilepsy drugs successfully. If any consolation they do continue to monitor them for a year post weaning.

I also had a friend whose child had grand mal seizures from birth and prescribed lamotrigine. He also came off successfully. They do wean very gradually and monitor and you have a right to re-referral if problems re-occur.

werewolvesdidit Wed 09-Jan-13 10:05:06

Thanks for those positive stories. Hope your DD and friend's son keep doing well.

ArthurPewty Wed 09-Jan-13 10:06:52

Message withdrawn at poster's request.

OwlLady Wed 09-Jan-13 10:10:24

my duaghter has epilepsy and I can completely understand your concerns. can you not be seen by an epilepsy nurse or specialist <hollow laugh> for their advice?

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