kcurf,

I do not have any words of advice... but my little brother has epilepsy, and has been to specialists all over the country. I know your pain (well he REALLY knows your pain), as I've seen him literally grow up with this. He's BEYOND tired of it and feels deeply cheated out of a "normal" life. You are not alone! I wish you well. Keep your chin up. (easier said than done, I know).

-Karen