Parker's Struggle with Infantile Spasms
When did you notice something was wrong?
Around late November we noticed some regression. Parker was losing milestones he had accomplished during therapy. In December he started to become more irritable and wasn’t responding to therapy. Late December we noticed Parker would freeze up and scream bloody murder. These episodes would last about 5 seconds. I immediately felt in that something was wrong. I just knew there was something neurological causing this. So I picked up the phone and called our neurologist. She felt that it didn’t sound like a seizure but wanted me to try and catch it on video. I could never catch it on video but then the day after I called her it turned into this long episode. He would jerk forward and his eyes would roll to the back of his head. He would do this several times. I immediately recorded it. We took him to the neurologist the next day where they told us he most likely has infantile spasms. I remember feeling so scared because the amount of concern the doctor seemed to have. I could tell by looking in her face that she truly felt terrible she was giving us this dreadful news. She told us to go home, pack clothes, and head to the children’s hospital.
(Watch our video of Parker’s spasms below.)
How did they diagnose Infantile Spasms?
When we arrived at the hospital they started to set him up for his EEG (electroencephalogram). An EEG is used to detect abnormalities that are related to the electrical activity of the brain. They would record his brain activity for the entire night. There were electrodes they attached to his head and secured with a bandage. During the EEG they look for a particular pattern called hypsarrhythmia (HIP-sa-RITH-me-ah). This is a chaotic pattern that is often helpful in confirming the diagnosis. About 2 minutes into the EEG he started having clusters of hysarrhythmia that confirmed he has IS. They could not confirm why he was having them because his MRI was completely normal.
(In the hospital where we received our diagnosis)
What is infantile Spasms?
Infantile spasms, also know as west syndrome, is a very rare epilepsy disorder that normally occurs during the first year of life. About 1 out of 5,000 babies will have west syndrome. Most children with IS go on to have developmental delays.
(In the hospital with IS. Wearing him was the only way to help him sleep.)
Our first step in controlling these spasms was by putting him on ACTH. Acth is a steroid injection and is used as a hard hitting drug to stop these spasms. We were giving Parker ACTH (Acthar gel) twice a day, alternating thighs. One week into treatment and the spasms were gone! The steroids made him eat an insane amount of food, they made him fussy, and he rarely slept. We went through 2 of the hardest months of our lives as a family. It was constant fussy, nursing, eating, and crying. No sleep, no peace, no nothing. After the Spasms were gone for two months we started to wean him. Once we started the weaning process we were very worried they would come back…But guess what…THEY DIDN’T! And within one week he was smiling again!
Parker a week after starting the ACTH weaning process.
We then switched him to topamax. The only issue he has had with topamax is a not eating. Luckily that issue has been resolved. Topmax works great. It doesn’t effect his mood. It regulates his digestive system. There isn’t anything we really dislike.
Things are going WONDERFUL! He is 15 months now He is 5 months spasm free and he is surprising us every day! He is now rolling over, propping on his hands, and interacting more and more!
If you have any questions about west syndrome please feel free to contact me via Facebook, tumblr, or YouTube.
