Sometimes I forget just how this IS journey with my son has affected my daughter, who is now 11. But recently she wrote this article , and of course, it made me cry. She has been such a tough little nut on this journey, and although I wish I could have protected her from all of it, that just wasn’t possible.
When my brother first started having seizures, I was 7, almost 8. My mom saw something and we did not do anything the first time because we did not know what it was. The second time became more serious. I was playing with my friend, my mom hopped in a car and drove away. I had no idea what was going on.
I kept asking what happened. Truthfully I was so worried. He was my only sibling and I did not want anything to happen to him.
Our Journey with Infantile Spasms 
Hi my name is Emily. And we are just over 2 months post infantile spasms. Our daughter was diagnosed fairly quickly at the end of May and was put on the steroid, ACTH. After about a week on the steroid her IS went away.
At the beginning of July she had what looked like some small scale spasms but had an EEG that showed no hypsarythmia so no IS. Her neurologist though she had possible focal seizures so put her on Trileptal. She has been on that for just about 1 month with no seizure activity until this week.
When waking up from an afternoon nap my husband and I noticed a cluster of about 20 spasms. And of course rushed to the hospital and started looking on the internet for answers. When reading we discovered that Trileptal isn’t reccommended in patients with a history or predispostition to IS
I’m curious to see what your experience with the Trileptal was.
We are at a dead end and looking for a second opinion as we speak!
Sending hugs & prayers your way.
Trileptal was used quite unsuccessfully before we had the right diagnosis, so I don’t really know much about it.
How long was she on ACTH and how long was the wean?
I definitely think a second opinion is a good idea. What part of the country are you in?
She was on ACTH for a total of 32days. She was on high dose for about 2 weeks and then the rest was tapering down. We are in Colorado Springs CO.
I’m not comfortable with her on the Trileptal because this week we found a forum where it said that Trileptal shouldn’t be used with kid who have had or are prone to having infantile spasms.
I hope you’re little one is doing better