It seemed as though Everett’s infantile spasm diagnosis came at the very worst possible time. He was just seven months old. We were just beginning to come up for air after his traumatic birth, months of other medical scares, and his Down syndrome diagnosis. I was feeling confident about where we were both mentally and physically. I was settling into the beauty of raising a child with DS. His smile was pure joy and his laugh was infectious. We were heading into our first holiday season as a family of four when I saw them.
I instantly videotaped the jerky head-bobbing motions he was making and sent the video to my pediatrician, but in my heart I knew that these were seizures. I was devastated. We took him to the ER that night, and after eight hours on an EEG my fears were confirmed; Everett was experiencing infantile spasms.
The neurologist put him on eight weeks of high-dose steroids, and within 48 hours the spasms stopped. I had only ever seen four episodes and they were gone as seemingly quickly as they came on.
The steroid regimen was brutal not only for him but for our entire family. The joyful, smiley baby I had come to adore was gone. For eight weeks he barely smiled; he barely interacted with us, and he avoided eye contact. Instead of crying to be cuddled, he wanted to be left alone to swing and stare into space. His face swelled and his appetite was insatiable. This was the hardest thing I’ve ever had to endure.
Every time we tapered the dose, I was terrified the spasms would return. I sat and stared at him and analyzed every movement thinking I was missing something, but I wasn’t, and he’s okay and he’s been spasm free for a year now.
He began smiling again and laughing and is still the star of every social gathering. He’s catching up on some milestones and thriving!
Our children are resilient and tough, and so are we. You can get through this. You will get through this. Your baby will smile again. You will see their personality return. You just have to get through this hard part, and trust me, the light on the other side is far better than you ever expected.
Today Everett is spasm free. He's very close to walking and loves giving kisses and playing with his big sister.
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