02-01-2003

Reading back through everyones posts I was starting to think that I would have less to offer to the list than some, especally in regards to seizure medications and what works or doesn't work! I think though, that I can offer a different alternative perspective in that Tory isn't on any medications for siezure control and hasn't been since she was 1 1/2 years old.

While not for everyone I am sure, this choice has worked well for Tory. At 2 months old Tory was on Phenobarb, ACTH, and Mogodon (I haven't spelled those in so long I probably have them all wrong!) and she was having literally hundreds of seizures/clusters a day. She was a spaced out little girl who had lost everything she had gained in the six weeks before seizures became a part of her life and after altering dosages for over a year I sat back and decided that if the drugs couldn't help her be seizure free, maybe she was better off drug free.

We had been given the same information as everyone seems to have, that it was almost impossible to control Aicardi seizures, so we went for it. Tory slowly was taken off the drugs and amazingly the seizures lessened with the same speed as her meds. We had one, just one day seizure free and while Tory still has daily seizures, she is much more in touch with the world around her.

So....not the safest course for everyone, but for us it has worked. I sometimes think maybe we should try meds again, but I always remember the weeks and weeks of adjusting to them and never really seeing a huge benifit.

:)Heather