Myleigh was on ACTH injections for almost 3 months, with in those three months her seizures intesity lowered to almost nothing. Her beautiful smile returned, and she was able to stay awake more then 30 min.
Shortly thereafter the injections stopped, her seizures returned gradually intensifying, and she began to become very uncomfortable, her bones acked and muscles hurt.
We are now waiting to find out if she eligable for another round of ACTH, and hopefully she is, this round will gove us more time to work with her.

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.

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!

(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.

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!

This brings back awful and distant memories for me. At one point, Katie seizured for 5.5 hours per day when we added up the numbers and that was about the same age as Azaria. The description of her seizures also sounds very similar to Katie's which continue to change. I too felt responsible somehow for all aspects of medical care. It seems exhauting to just think about it and it's been so many years now. One of the veteran Mums told me that the first two years were always the worst and in our case, that was certainly true.

OUR EXPERIENCE WITH ACTH
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I know of MANY families that had little if any success in controlling our infant daughters' seizures and who made the decision not to use ACTH on our girls. Our daughter Hannah's seizures were extremely frequent (10 per day)and long in duration (up to 45 mins) as an infant/toddler. We researched ACTH and it's effectiveness in children with Aicardi Syndrome, and discussed the possibility of it's use with our neurologist and other parents as well as with Dr.