10-01-2004

My Hannah is turning 11 next week. She was on ACTH at age 5 to 8 months. Here's our experience.

While on it, she did experience some high blood pressure concerns but never needed meds to control it. She did cry nearly everyday the first week from like 3 to 6 pm. (that was tough!) She got really chubby but all of this went away as soon as she stop the injections. ACTH never stop her seizures but she did become a totally different child!

Before the ACTH... Hannah never laughed, never giggled, never even smiled. In fact... she didn't even seem to know anything existed outside of her world. Not us, not her sister... nothing. The second day she was on it... it was as if she came alive! She laughed, she smiled, she began looking at us, responding to anyone holding her. I have described it as "coming out of the fog." And this has never gone away. Hannah is a very responsive/animated child. She has such a sense of humor and doesn't miss a thing. She's always watching everything and everyone around her. Very attentive.

The ACTH might not have done what we had hoped it would do... stop the seizures... don't think that has happened to any child I know of. But... it gave me the child I have today and for that... I'm grateful. If I had to do it all over again... I would.

Mary Jane