Maverick's journey with infantile spasms
Maverick was about five months old when I noticed some strange jerks after bath time. I only noticed them because he did it over and over for a few minutes. It was long enough for me to put him down and run and get my phone to record what I was seeing. I also knew it wasn’t just baby jerks because I had seen Instagram videos of these spasms from some moms of kids with Down syndrome. I immediately sent the video to one of the moms, and she confirmed that it looked like what her son had.
I then called my pediatrician’s office. After a day of not being able to send them the video and a bit of a runaround, I called the 24-hour line that evening. I got the head doctor’s cell phone. He was awesome and told me to text him the videos. He confirmed that these were not baby jerks and told me to take him to the ER. We were admitted that night and put on an EEG almost immediately. We saw the neurologist in the morning who confirmed the infantile spasms. She was so impressed that I knew what to look for, and over and over she praised the mom groups I’m a part of.
Maverick was put on six weeks of steroids with several follow up EEGs over the next six months. He has no more spasms, and all EEGs have been clear since that very first night. He is now almost one year spasm free!!
We are thankful to be on the other end of this process and so, so thankful others were willing to share their stories so that I knew what to look for.
- Erin