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Epilepsy Blog Relay: One story of a hard to recognize illness in kids

This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018.  Follow along!

Randi’s Story

My blog, SonyasStory, is about my journey parenting my daughter Sonya’s and sharing her journey with the rare genetic disorder CDKL5.

An excerpt from Sonya’s Story:

When our daughter first had a seizure it was not like the movies. It was subtle, quick, and questionable. I honestly wonder how many times in her first days I missed, or how many I saw but attributed to something else. I often wonder if I felt them in-utero, or if her first one ocured right after birth. In hindsight, the “wonky eye movement” we have learned are her trademark seizures. So many times these will be missed by those who are unfamiliar with her, to be honest, even those who know her extremely well can still miss these types. They happen when you turn your head to tie your shoe, when you blink, or when you rub your eyes. They are less than a second and look benign, but just as devastating to her brain as her other types because they tend to occur in clusters, seconds apart, and for lengthy periods of time. So many times when I point out a seizure to someone who has just met Sonzee the responses are always the same, “Oh wow, I never would have known that was seizure” and “How did you know that was a seizure?” The thing about seizures is that they are not always obvious and they are not what you might envision. READ MORE

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