New Here - thinking about starting the diet

[Guest guest]

Hello, my name is , and my daughter Jenelle is almost 14 months old

(10/22/02) and suffers from Infantile Spasms, myoclonic seizures and has global

development delays, sensory issues and hypotonia. We've tried ACTH, Vigabatrin,

B6 and of course she's been on Phenobarbital.

Her reaction to ACTH was frightening in that her seizures increased so that she

was sub-clinical status. After ACTH we started Vigabatrin. It seems to have

helped her spasms, but not her myoclonic type seizures. We are currently

weaning her from Phenobarbital to see if the Vigabatrin alone will do better.

She also takes 100mg of B6 a day, which also seems to have helped the seizures.

I believe our next option will be the diet, and I'm starting to educate myself

and my husband about all that it entails. My biggest fear is the fasting

period. Jenelle does not use her hands and does not feed herself. She is only

eating pureed foods that are spoon fed to her - most parents who've done the

diet tell me that may make it easier! We live in Southern California (Orange

County) and are on the waiting list for the Keto Program at UCLA.

Looking forward to gaining information from parents who know best. Thanks!

with Jack born on 01/01/01 and Jenelle born 10/22/02 with hypotonia,

global delays, sensory issues, Infantile Spasms and myoclonic seizures.