This is a collection of the articles, studies, and sources I found most helpful in making my decision about the course of treatment for Gloria. It is a very tough decision with consequences for all actions. In the end we made the decision to stop the spasms at all cost and do our best to preserve Gloria's quality of life at the other end of the process. It was scary, risky, and frightening, but in the end it worked for Gloria eventually. The treatment course Gloria followed was Prednisolone low dose, Prednisolone high dose, ACTH, and Sabril. We finally got lasting seizure control with Sabril, which she was on for 6 months and then weaned off over a few weeks. Don't give up there will be highs and lows, but remember your child has the best advocate in their corner and that is you.
ACTH Side Effects from the Acthar Website - This website explains the side effects of taking the ACTH injections. A piece of advice from me about ACTH is to learn about rotating the injection sites and the range in which you can inject.
Epilepsy Studies Spreadsheet - This is a collection of the recent active studies that involve Infantile Spasms. If you know of any more please comment or email me at leslierogers@sbcglobal.net.
Peer Review in Review - This is where I would start if I was the parent of a newly diagnosed child. It covers all the basics of diagnosis, treatment, and management.