Epilim - good stories please!

[beckstar]

Hi, my 6 year old son has just started on epilem for absence seizures and has been told that he has generalised epilepsy. He's always been in his own world and has always blinked alot, but it's a shock that he has been diagnosed with epilepsy as he seems so 'normal' and is coping and achieving well at school. It's hard to tell when he's having an absence as its a matter of seconds, you would think he was just deep in thought. It was only detected as his teachers kept asking for us to get his ears tested as they felt he wasn't always hearing what was going on, other than this there has never been cause for concern. But we have to believe what the EEG says, he's had 3 in total including a sleep deprived one and all have shown epileptic activity - my son must be hiding it well!

My worry now is that we are medicating what seems to be a healthy child and all I read are awful, awful stories about epilim. They are shocking and upsetting, so I just want to hear something good! My son has been on it for 3 weeks now and we are slowly upping the dose, he's on 10ml at the moment. He seems a bit tired but nothing else.

Would love to hear some positive stories!

Hi, my dd2 spent 18months on epilim from being 18 months to 3. When not medicated she has full seizures with medication we can control those and her absences.

I can understand worrying about medicating absences as they seem like nothing but if those absences are having a big enough affect on his concentration in class to warrant his teachers asking about it then I would be inclined to try to avoid them. Also it goes beyond this at 6 he is going to want to start getting a bit of independence, dd2 had an absence at the side of the road recently and I'm haunted by the possibility of it happening in the road, I'd much rather she was on meds which will avoid this situation if that makes sense?

What's your target dose? In context at just past 3 dd was on 10ml morning and night so his dose currently isn't very high if that's any consolation? Have you discussed with the consultant using the absolute minimum to control it? Dd is nearly 5 now and on tegretol but our consultant has given us a dosage range to start at the bottom of and increase if necessary between appointments. Does your area have an epilepsy nurse? My last area (telford) did and she was fantastic at explaining why things were necessary and was instrumental in spotting that dd2 needed to change meds. I've found I have to fight for dd and the answers we need but it does get easier once you start to understand and get used to it