saying hello

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

julieann

New
Messages
1
Reaction score
0
Points
0
newbie saying hello

hi everyone im julie, my son adam is 7 years old had has epilepsy that has become a bit of a night mare, he also has facial twitching, he was diagnosed by a consultant with benign rolandic epilepsy just over a year ago was put on carbamazipine ( tegretol ) with the seizures still coming his dose was put up and up until it was to high for him and was having bad side efects he was on 300mg in the morning and 400mg at night . he was passed on to a paediatric neurologist in september 2011 from there he has had a video telemtry with the results saying that its not consistent with benign rolandic epilepsy.what he says he does have is left sided rolandic spikes which are extremely frequent, becoming continuous in sleep. the problem now is the neurologist as said he belives adam has symptomatic focal epilepsy and cortical myoclonus. adam had a mri scan a year ago and it was clear . now we are waiting on a 3T mri .
adam was put on to keppra but reducing the carbamazipne and slowly giving the keppra . we had problems straight away he was really drowsy and soon became really naughty couldn't sit down and hurt himself. his epilepsy nurse advised to stop the keppra but continue to lower the carbamazipine untill he's on 200mg twice daily .then try to introduce the keppra again. the problem is is that hes having seizures during the day and now im being called into school daily now. very worried and confused :e: xx
Would really like to hear from someone who has gone through this or is thank you
 
Last edited:
Im so sorry to hear about the difficulties you're having with your son. Im a mom of three little boys, but have had epilepsy all my life. My parents were told I had epilepsy at 18 months old, since then Ive been on medication. I am now taking Keppra XR, but for years, since around the age of 17, I was on Keppra and Carbatrol. Just last year, when I had my first VEEG, my neurologist took me off the Carbatrol and kept me on the Keppra because I wasnt having any grand mal seizures, but simple partial seizures. I saw you posted about Carbatrol and Keppra and wanted to let you know that everyone reacts differently to medications. For me, the combination worked wonderful for me. Its been 10 months now since Ive just been on one seizure medication, Keppra XR, and so far things are going good.

If you have any questions, please feel free to ask. :)
 
Back
Top Bottom