Epilepsy anyone?

[Costaaddict1]

Just wondering if any if you have any dc's with epilepsy? Our dd has epilepsy and is on Sabril, doesn't seem to be working at the moment though! Anyone on any other anti epileptic meds?

Hi there. My dd, 5, has idiopathic epilepsy (they can't find the underlying cause). She is on epilim (sodium valporate). Her seizures have always been quite far and few between but her first one lasted for hours so that is always a worry. Does your dd have an epilepsy nurse or consultant - get them to talk you through other possibilities?

Hope you find a medicine that helps. It's awful seeing your dc have a seizure.

Yes - we've tried:

Tegretol (Carbamazapine)
Lamictal (Lamotrigine)
Clobazam
Keppra (Leveticeram)
Ethosuximide
Zonisamide
Lacosamide

Usually in combinations of 3 or 4 of them at once, plus a VNS. We have also talked with the consultant about Topiramate and Rufinamide.

From my lay person's knowledge of epilepsy, what works for one child is useless for another and noone really knows why. (Sabril was our wonder drug which worked immediately!)

There are many many options though. Agree with mumsuz, kick up a fuss and ask about other options. Ring your epilepsy nurse and ask for an urgent review.

I'm currently sat here next to my DS who is having a 24 hr EEG. So I'm marking place and will be watching this thread.

When was your dd's medication last reviewed OP?
The trouble is that treating epilepsy is not an exact science. What the doctors usually aim for is the minimum dose needed to control the seizures because too high a dose may lead to unpleasant side effects.
If your child has had a growth spell recently, the medication may need to be increased simply because a bigger child needs a bigger dose.
This could be the explanation and is perfectly normal for epileptic dcs.