02-01-2003

I know of MANY families that had little if any success in controlling our infant daughters' seizures and who made the decision not to use ACTH on our girls. Our daughter Hannah's seizures were extremely frequent (10 per day)and long in duration (up to 45 mins) as an infant/toddler. We researched ACTH and it's effectiveness in children with Aicardi Syndrome, and discussed the possibility of it's use with our neurologist and other parents as well as with Dr. Aicardi himself (who does not recommend it's use for this diagnosis.) Then we searched out our "gut instincts" and ultimately made the decision not to use it.

We are extremely happy that we made the decision not to go the ACTH route. Not only did we not have to subject her to weeks of potentially horrible and dangerous side effects, but we now have an 11 1/2 year old that is rarely even ill with a cold, is normal size, and has a seizure only once every few weeks.

We have ridden out the very difficult patches and seizure-wise Hannah has gradually improved over the years without ever having had to use ACTH. In the past eleven years since we first considered this drug, the statistics have remained unchanged, which further reinforces that we made the right decision for us. To my knowledge, more than eleven years later, there are still no girls with Aicardi Syndrome which have experienced complete long-term remission from seizures for after ACTH treatment yet I know of several who have had serious complications from its use.

Every drug has it's benefits and risks associated with it, and each family finds what they are comfortable with in regards to balancing the two. It is a personal decision that we each need to make for our daughters, after thorough research, and we will not all choose the same or even similar paths because we and our girls are all so different. I just wanted to share with you our chosen path.

Pam Drake
Mom to Hannah