Dear Friends,

There has been some discussion, again, about the use of ACTH to stop seizures. For those of you who have known me as Emma's mom and the "newsletter lady" for awhile, please stop reading NOW...!

My daughter, Emma, was on ACTH as well a number of years ago. But more importantly than that, after reading your letters and gathering information for the surveys, etc. as well as talking to Dr. Aicardi specifically about using ACTH with our girls, I feel compelled to respond to the ACTH issue.

Diastat is the only other medication that we use at present. We resisted using it until May of 2002, but Anna began having a type of seizure which builds in intensity like ocean waves which get stronger with each new wave, and Diastat is all that stands between us and the ER (we've nicknamed these events "Superseizures".) We give Anna a 5 mg. dose shortly (5-10 minutes) after the seizure starts and a second one (rarely) 5-10 minutes or so after the first dose, if necessary.

Hello!

Anyway here is our ACTH story, Caitlin was almost 9 months when someone finally listened to us and sent us to a neuroligist. She had been having really long and hard spasms the entire time. They started her on Acth in the hospital and by that evening had no more spasms the entire time she stayed on ACTH (which I think was 2 months) She was fussy at first and did get very chubby(If you can imagine my skinny tall girl chubby) because it is a steroid. I look at the pictures and they don't even look like her!