stories-amanda

Amanda’s Story

Amanda was born on 4/12/2004. She was a beautiful healthy baby with some minor issues (jaundice and colic). On Sept 28, 2004, while waiting at the bus stop for my son, I looked at her in the back seat and saw that she was having a seizure.

 

Her first seizure was probably between 30-45 minutes. Her next 2 seizures were about 4 and then 5 months after the first. Despite trying phenobarbital, trileptal, depakote and topomax, the seizures still persisted. She averaged 1-2 big seizures a month and after taking trileptal, she began having absence seizures daily. She’s been on the ketogenic diet for over 3 years now.

 

Amanda went over 2 years without a major seizure. The third year was different, and she had several break through seizures, I think due to the introduction of Zarontin. There wasn’t a problem until the doses got higher (then came nightmares, myoclonics in the morning and bigger seizures including a 24 minute t/c).

 

The tremendous news is she now attends a “regular” kindergarten as a regular ed kid. She has PT for balance and strength issues and a one-on-one aide for safety precautions and to help her with her diet. So far, she is doing just fine there and really enjoys being with the other kids.