02-01-2003

Vigabatrin - When the tegretol didn't control her seizures, she was then started on vigabatrin. We were on this for two weeks. As soon as we started the medicine Marisa's seizures stopped; it was like having a totally different child. She seemed to be more alert and even smiled some. After the "honeymoon period" ended it was our worst nightmare, she began having these horrible blood-curdling screaming seizures and kept shaking all over like she was cold. After receiving a dose of ativan Marisa was calm for the night, but once the ativan wore off she began having these shaking seizures again. We decided at that time to switch neurologists, and hopefully get some better answers. Thankfully, she was then diagnosed by our new neurologist with having Aicardi syndrome. Our neurologist then took her off the tegretol and vigabatrin and added topamax to her phenobarbitol.