10-01-2004

(from the email list)

Zoe's experience on ACTH:

She was on it over the course of 2-3 months total, I think. Can't quite remember all the details. She puffed up and that part is not pretty. Her seizures diminished from over 20 at the beginning to 0 at the end. This lasted for a couple of weeks. Seizures started up, but only at a few a day. She has been on many other meds since this. She has never returned to the seizure pattern she had pre-ACTH. They told us the hypsarythmia was broken on her EEGs. As Jacqueline said, she continued to spasm, but without the hypsarythmia.

The down side to her experience - and it's a biggie - is that she developed pneumonia and was hospitalized. This occurred at the end after her second round. Thankfully, it was not serious. I read the other parents' accounts of how their daughters reacted to ACTH and was once again reminded of how differently they respond to meds. Zoe stopped smiling while on it. That was very difficult. In fact it was during her treatment for pneumonia that she began to smile again! Richard and I believe she benefitted from its use in the long run.

I would never recomend a treatment to someone on the basis of one or two outcomes. This is a controversial therapy in our AS family. You will have to make that decision carefully. One thing I will say, though, is I don't like your doc's unwillingness to listen to your concerns. You may want to shop for one that has a reputation as parent friendly.