Re: Has anyone had to wait 8-10mo. for a Cohen apt?

[Guest guest]

Sydnie's seizures are getting worse and her current epi is afraid of putting her on different meds because of the mito.

, We have been in the same situation with seizure meds. What does Sydnie take for epilepsy? My daughter's epilepsy was first discovered in late '99, when she was 2 1/2. She was put on phenobarbitol and suffered nasty side effects from it. I tried to talk to her neuro about changing meds, but he was adament at that time that phenobarb was her only choice as we did not know what was going on with her metabolically. In 2002, when her seizures got worse and much more frequent, we tried using Diastat (rectal valium) for awhile to break up clusters and prolonged seizures. I found that I was using that too much and he finally reccomended trying Keppra. The Keppra has controlled her seizures well without all of the side effects I saw with the phenobarb. A few months ago, it had to be increased, and since then she only seizes when there is a reason (constipation, lost sleep, illness), and she is being weaned off phenobarb.

There are concerns with mito and some seizure drugs. Valporic acid (depakote) is one that should be avoided. But I believe that Topomax and Lamactil are both reccomended as safe for mito. There should be some info on this at tthe United Mitochondrial Disease Foundation website www.umdf.org

Hope this is helpful, I know how difficult uncontrolled epilepsy can be.

e, Chelsea's mom (nonspecific mito)