HELO NEEDED, EPILEPTIC SEIZURES REOCCURRENCE - ADVICE NEEDED PLEASE!!!!

[louise35]

My daughter who is now 10 was diagnosed with idiopathic epilepsy over 2 years ago. She was put in Epilim tablets and had no more seizures between November 1993 and November 1995. As she had gone 2 years with no seizures the consultant weaned her off the tablets just before Christmas. On Saturday morning I was just having my breakfast and my daughter shouted that she was having a fit, I went up and she was convulsing on the bed. We took her to A&E under hospital advice and had her checked out. The Doctor said he was going to treat it as a "one off" occurrence and that it can sometimes happen when they've come off the medication and it can possibly never happen again. I'm not convinced and was wondering if anyone else had had this happen again just the once or does it look like she will need to go on the medication again. I'm now watching her like a hawk and I am frightened that its all going to start again. I would be really grateful for any advice. Many thans, Louise.

[RTKangaMummy]

sorry, your dates make no sense

[louise35]

Sorry if my dates sound confusing. I'll start again. She was diagnosed with Epilepsy in November 1993 after having 2 seizures. She was put on medication in November 1993 and was kept on it until November 1995. In this period she had no seizures so the consultant decided it was time for her to come off the medication as she had gone for 2 years with no seizures. She was weaned off them from November last year over a period of 6 weeks which took her to just before Christmas. She had another seizure out of the blue on Saturday. The doctor at A&E said it may never happen again but I am wanting to know is has anyone else had experience of coming off medication and then having one last solitary seizure. Or does it look like she she probably start having seizures regularly again.

[lou33]

do you mean 2003 and 2005, instead of 1993 and 1995?

Despite that, i think it's a wise decision not to jump staright back onto the epilim when she has had only one seizure, the doc is right in that this can happen, but it doesn't necessarily indicate that she will progress to having more seizures.

Also, i think you should be made aware , if you don't already know, of the high risk of epilim causing birth defects when taken by women during pregnancy. I know this is a long way off for your daughter, but sodium valproate syndrome is a well known and recognised side effect now. My oldest was born with problems due to me taking epilim during pregnancy , but at the time it was a real fight to get them to acknowledge it was because of the anti convulsants.

I hope the seizure was a one off, and she continues to be fit free.

[Prettybird]

So how old is she now?

November 1993 is over 12 years ago - so if she is 10 now, that was before she was born!

[louise35]

Oh I am so sorry I have just realised what I've done, yes I do mean 2003 and 2005, it just goes to show what sleep deprivation does to you lol, I haven't slept properly since the seizure, I've had her in bed with me and been watching her like a hawk. Sorry to cause confusion.

[louise35]

Lou33 thanks for the advice, yes I was aware of the possible problems with Epilim during pregnancy, like you say its a long way off yet for her and I hope by then if she does have children that she has had no seizures and she does not need to be medicated. If she still does need it then hopefully by then there may be a more suitable anticonvulsant for her type of seizures that does not pose a risk to an unborn child. Thanks for the reply, I cannot believe I typed in 1995 and 1993, how embarassing lol

[joanna4]

I have epilepsy and i took tegretol retard at quite a high dose -800mg but remianed fit free but ya know zombified.I dropped slowly before conceiving but hit a clitch at 1oomg so my dose had to be readjusted to 200mg.I remained on 200mg and had 2 very healthy children.I personally would rather take a low dose and remain fit free as my blood levels indicate that I continue to remain fit free only because i have medication in my system and its removal would onset again.
Tempting as it is to watch her hawk like stress can sometimes trigger fits just try to keep things as level as possible.Does she have a trigger i know it can be hard to identify whrn you have had years of no fits.
Hope she is well soon.

[lou33]

Im allergic to tegretol, which is why i was kept on epilim

[joanna4]

lol and I went on epilim and lost a full week!

[lou33]

Weirdly, i used to be ok on epilim, but after my oldest was born with valproate syundrome, i stopped taking them until my family was complete. WHen i went back on them i started having biger seizures than i ahd ever had, so i stopped taking anything just over a year ago, and have been seizure free!

Wating for my driving licence now

[louise35]

Unfortunately my dd had another seizure at 3am yesterday morning so back to A&E we went. She was admitted and tests were done and the general opinion is that she needs to get back on the epilim asap. I am relieved in a way as while she was on them she was fit free for 2 years and it stopped me worrying so much. It scared me that the fits seemed to come back with a vengeance so quick after stopping the medication. Anyway we are back at home now and have started a gradual increasing does of Epilim again so at least she should be back on an even keel within a month or so when the drugs settle in her system. Thank you to all those who replied to my post and tried to help me to answer my questions, but it looks as though they were answered for me anyway after the second seizure. Louise.