Our Experience with ACTH

I thought I would share our experience with ACTH because everyone's is so different. It truly effects everyone different. When Aiden was first diagnosed with Infantile Spasms I read about the side effects ACTH. I was scared! I basically thought I would have a fat, unhappy baby who moaned and fussed all the time. It also said that he may stop smiling, making eye contact and playing. I read that he might not sleep and that is was going to be a very long 12 weeks.

Thank God, Aiden has had a very, easy time so far on ACTH. I thought I would share our experience to help other parents who are going through this.

Adrenocorticotropic hormone (ACTH), or corticotropin, is a hormone that is produced in and released from the pituitary gland. ACTH is normally released from the pituitary in response to stimulation with corticotropin-releasing hormone (CRH), a hormone produced in the hypothalamic region of the brain during various types of stress or pain. The principal action of ACTH is to stimulate the synthesis and release of steroid hormones from the adrenal glands, which lie on the surface of the kidneys. ACTH is the principal modulator of cortisol, the most important steroid hormone in man.

Here are some common side effects of ACTH, followed by how Aiden handled them.

 Serious, disfiguring weight gain, especially in the face

Aiden gained one pound while in the hospital. Maybe a pound and a half. I did have to buy a few more outfits, but it really wasn't as bad as I expected. His cheeks and tummy got a little rounder. He lost one pound when we came home and four weeks later as gained one pound again.

Increased blood pressure

Aiden's blood pressure has remained exactly the same. It was monitored everyday for the last four weeks and will now only be checked once a week.

 Enlarged heart

I pray this doesn't happen. I have no clue how they check for this. I don't think it is very common.

The shakes

I have not experienced this. Maybe when he is completely weaned off of it. His bottom lip quivers from time to time, but I believe that is due to the other medication he is on, Topamax. Topamax makes it hard for babies to regulate their own body temperature.

Constipation while on ACTH

Never a problem for Aiden

Sleep - expect Baby to sleep very, very, very little

Aiden is sleeping fairly well. He wakes a little more often to eat, but it is not that bad. He takes two long naps during the day (2-3 hours) and wakes 2-3 at night. Sometimes I get luckily and we get a long streach from 12:00-5:00. Its kinda like having a two month old baby again.

 Increased Appetite

Aiden ate a ton in the hospital. He was eating every 1 1/2 to 2 hours. Now that we are at home and have started the wean process he is back to normal. For being six months, I think he eats more at an 7-9 month old level. He is drinking between 20-35 ounces of formula a day (the normal is 24-32) and three meals of baby food a day (the normal six month old would eat maybe 2). He likes his food but it is not anything crazy!

 major reflux issues

Aiden has been prescribed a medication to help with reflux since he left the hospital so I have no idea if this effects him or not. I wasn't going to five him the medicine until it became a problem but I figured he had enough problems and didn't want to add an upset stomach to the list.

Anyway thank God Aiden has had such an easy time. I know that we still have about a month left and things can change. But I read so many horror stories out there that I wanted to share my positive experience. I know that I would do anything and go thru anything to stop the spasms. I know that most parents whose children have IS would do the same. I justed wanted to provide a positive outlook for parents who have read all the horror stories out there about ACTH.