ACTH

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

Hello! My name is Kelly Keys I have met some of you, but I don’t always keep in touch. Between my own business & my husband’s it keeps me pretty busy. My daughter is CarlieRae she is 10 & will be 11 in march. We tried acth when Carlie was 10 weeks old. At first it stopped all of the seizuresfor about three weeks. In that first three weeks life was great beside her rapid weight Gain. She gained 22lbs in those weeks,but she was more alert. Then in the fourth week all of our probelms started. The seizures came back worse than before. Her breathing became labored. Her reflux was really bad,so bad she started aspirating. Which in turn made her lungs even worse. They started giving her lassix to try & get rid of the fluid weight she gained. Which in turn gave her kidney stones really bad.To make a really long story short it was the start of hundreds of new medical probelms.I started off before the acth with a baby with only seizures. To a baby with a feeding tube,oxygen, suctioning, many medicines & aalot of hospital stays. Which down the road lead into a three year old child with a trach , ventilator 24 hours a day, four g-tube surgeries, 24 hour tube feedings due to sugar probelms, a permanant iv line to draw blood and give iv antibiotics, an ileostomy and still 15-20 seizures a day lasting 5-35 minutes in length. So for three weeks of good, We got 10 years of fighting for carlie’s life. One minute she can be fine & the next in critical condition. If i had it all to do over again I would haave taken longer to investigate ACTH. I would never suggest anyone take the chance I did with my daughter for three good weeks. I hope this helps. God Bless all.

Kelly Keys

CarlieRae10

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! Anyway, I never did regret using this drug because Caitlin still rolled and did ok besides being fussy. I did hate that it was short term and as soon as we discontinued the seizures did return! That was very disappointing!!! But just the short term seizure control I thought helped because she had nothing before that. You will hear many opinions from our wonderful panel of experts and I hope you take them all in to account.

Tracy