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.
Journal literature definitely support the use of ACTH to stop infantile spasms in the general population of infants with that type of seizure. However, when you talk about using ACTH with girls who have Aicardi Syndrome, the results are significantly different. While it is true that ACTH HAS been effective in a small number of girls with Aicardi syndrome, I believe that still, in the main, the drug is NOT effective in stopping the seizures. There are some girls who, while on ACTH, have had either decreased seizures (most of this group) OR eliminated seizures (few of this group). The problem is that in nearly 100% of the girls, the seizures return after the child is weaned off the ACTH, which must happen as ACTH is a steroid and therefore a short-term therapy for seizure control.
Keeping this in mind, the BAD news about this therapy is that the girls gain a LOT of weight because ACTH is, again, a steroid. And they are extremely irritable on this drug. Colic times ten hundred. Dr. Aicardi himself does not recommend this course of treatment because of the negative side effects and also the possibility of respiratory complications.
We are beginning the process of putting together a new survey of member families, and it would be prudent at this point, I think, to include a separate section on the survey about the administration of ACTH. Seizures are a part of our girls lives. Period. End of story. I do hate to be so matter-of-fact about it because I can still remember Emma as an infant and how deeply distressed her father and I were watching her seize. That feeling never really goes away, I’m sorry to say, although we do get lots better at dealing with it. But I also believe that sometimes in our efforts to eliminate seizures from our girls lives ~ a rather futile effort for most of us ~ we can compromise the quality of our daughter’s lives.
Please forgive this lengthy soap-box display. Each of our daughters are their own individual human beings and the best we can do is to trust our instincts about doing what is best for them.
I hope this has been helpful in some way.
Denise Park Parsons, Mom to Emma and Katherine