Will’s spasms/seizures started in January of 2021, but they weren’t diagnosed until February 24 despite many trips to various doctors who called it reflux, infant startle, and even “a Down syndrome thing he’d probably outgrow.” None of that sat well with us, so we kept asking different doctors.
The seizures were quick little jerks where all of his muscles would tighten, and his eyes would roll a little. Finally, I showed a video to our genetics doctor, and she scheduled an EEG the very next day.
Will spent eight weeks on high-dose prednisolone and had several EEGs. It was harsh and exacerbated his reflux so we needed to spend a week in the hospital. The meds also made him very agitated and he seemed to lose his smile and spunk.
But like all journeys, it came with some beauty. New friendships formed as I met other moms in the Down syndrome community who had been through or who were going through the same thing. There’s strength and healing in community, and I’m forever grateful for those who walked beside us and let us walk beside them.
I remember sitting in the hospital bouncing Will and wishing my husband could have been with me. It was 2021, so he wasn’t allowed in. I remember my heart changing in that hospital room. It was the moment I accepted that this was our current reality and I was going to find beauty somewhere in that room. This practice of finding beauty no matter what has stuck with me. Hard things and beautiful things can coexist.
I knew nothing about infantile spasms before Will had them. I wish I’d known they were an emergency because we could have avoided a month of no answers. My best advice is to videotape anything you think looks anormal and share it with your doctor. Will’s spasms were not typical, as they did not occur in clusters. It’s one of the reasons they were likely misdiagnosed. We spent a week just trying to get a videotape of one because they happened so randomly and without warning.
The only lasting effect for Will was that the seizures affected his ability to swallow and sent us on a long feeding journey. But today he eats like a champ and is as happy as can be! His smiles returned as soon as the meds were stopped.
If you are going through IS, know you are not alone. And don’t lose hope. Our children are so resilient, and while it’s hard to watch them suffer, seeing them smile and laugh as they wean from the meds is the best thing ever.
We are thankful that Will responded to the first treatment. He was spasm free after about two to three weeks of steroids. And today he is still spasm free.
He’s now a spunky three-year-old who loves to ride his bike, play just about anything outside, and is a quick learner. He lights up every room with his bright smile and steals the show everywhere he goes with his adorable personality. The journey with IS was hard, but it made us all stronger in many ways. If this is your journey, hang in there and please reach out for help.
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