Seizure Control - How to get it!

[dland8]

My 16 year old daughter has recently been diagnosed with a metabolic disorder (possible MELAS) that includes seizures. She has been in ICU three times this year in Status Epilepticus. A number of drugs have been administered in the emergency situation including midaz, phenitone and many others. The only medication that has been able to break the cycle has been an older drug called paraldahyde given rectally. She is currently on 600mg of tegretol and 125mg of Keppra. Unfortunately she is often psychotic and I am not sure if this is the drug or the condition. She has been given other drugs including Toperamate and Lamictal but these seem to contribute to her psychosis. I would like to hear from any one who may have a similar condition and has managed to control their seizures. When the Tegretol was introduced she began having a number of absence seizures per day. The Keppra was introduced to deal with the absences and then she began refusing to eat, drink or take meds. I have been told by a Neuro if we can manage to control the seizures we may have some relief for a period of time from the condition. Any information would be greatly appreciated.

Desperate Denise:confused:

[lor]

Denise, With seizures and those meds, it sounds like epilepsy. I have epilepsy and have also taken Toperimate & Keppra and I am taking Lamictal. All meds treat different people differently. I don't recall how the first two were for me but Lamictal controls my GM's (tonic-clonic's). Why don't you go to the epilepsy forum & ask questions? Maybe they can help. There are also child & pediatric epilepsy forums