Colt's Infantile Spasms Journey
Colt was diagnosed with infantile spasms when he was six months old. I happened to be videotaping him and noticed that he was doing some unusual movements. His arms and knees would raise at the same time, similar to what a startle looks like.
I sent the video to one of Colt's therapists and to his pediatrician. I was advised to go to the ER immediately.
Once we arrived, the doctor was able to see the movements and thought it was best to do an overnight EEG. We were then asked if we knew what infantile spasms were. We had no clue what they were, but we were about to find out.
The team of doctors met with us later to discuss his EEG. They were in fact infantile spasms. Colt began many aggressive treatments. Unfortunately he did not respond to them. Two rounds of high-dose steroids, vigabatrin, Topamax, and the medical ketogenic diet. The side effects were not the easiest. Extreme irritability, insomnia, excessive sleepiness, reflux, weight gain, and loss of personality.
While this was hard, we knew it was only temporary.
Colt's spasms were starting to deplete milestones. His oral eating came to a halt, and he required a G-tube.
We switched doctors and tried a new treatment: ACTH injections.
After one week, Colt was spasm free!
He was spasm free for a year and a half but was just recently diagnosed with atonic seizures at two and a half years old. We are now navigating this new journey.
This journey is hard. It is not meant to be traveled alone. It took us seven long months of different treatments until we found the right one.
Always keep in mind that what works for one child may not work for another. Don't lose hope. Our children are strong and resilient. There is light at the end of the tunnel.
Though it's hard, try to rest your heart. It is so easy for that feeling of helplessness to overwhelm you. You are not alone, and so many people want to support you. Remember to always keep God in the forefront; he will make a way.
Today Colt is an amazing 3 yr. old little boy who is full of joy. He enjoys playing with his toys. Mickey Mouse and Toy Story are some of his favorite things to watch. He keeps us on our toes and continues to shine his light everywhere he goes.
- Angie