http://emmasgrace.wordpress.com/2008/03/03/some-days-are-good/ A journal of Emma's journey with epilepsy. Tue, 11 Nov 2008 00:39:43 +0000 http://wordpress.com/ hourly 1 http://emmasgrace.wordpress.com/2008/03/03/some-days-are-good/#comment-51 bill Wed, 03 Sep 2008 20:38:56 +0000 http://emmasgrace.wordpress.com/?p=42#comment-51 I am truly sorry to hear about your child and all that you have and are now going through. Our daughter, Mary Grace, was diagnosed with IS when she was about 6 mo old. She has Down syndrome. As you have, we were frantically visiting pediatric neurosurgeons all over south florida. Thankfully we were given two options they felt would be the first line of treatment; ACTH and Vigabitrin. We decided to try the intramuscular injections of the ACTH because Vigabitrin was not an FDA approved drug even though Childrens Hospital in Miami would provide it for free as part of a study they were doing. My wife and I had to learn how to give the injections at the hospital and we took her home hopeful it would work. Her IS symptoms began to decrease after 5 days of treatment (two injections per day, don't rememeber the dose) and completely disappeared within 10 days. She never had a relapse and is now 3 and a half. I just wanted to let you know our experience with IS and the use of ACTH in case you have not gone in this direction. God bless. I am truly sorry to hear about your child and all that you have and are now going through. Our daughter, Mary Grace, was diagnosed with IS when she was about 6 mo old. She has Down syndrome. As you have, we were frantically visiting pediatric neurosurgeons all over south florida. Thankfully we were given two options they felt would be the first line of treatment; ACTH and Vigabitrin. We decided to try the intramuscular injections of the ACTH because Vigabitrin was not an FDA approved drug even though Childrens Hospital in Miami would provide it for free as part of a study they were doing. My wife and I had to learn how to give the injections at the hospital and we took her home hopeful it would work. Her IS symptoms began to decrease after 5 days of treatment (two injections per day, don’t rememeber the dose) and completely disappeared within 10 days. She never had a relapse and is now 3 and a half. I just wanted to let you know our experience with IS and the use of ACTH in case you have not gone in this direction. God bless.

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