Infantile Spasms Diagnosis and Treatment Journey Inspires Children’s Book

This week on Seizing Life® Kate Kostolansky shares her daughter Charlotte’s infantile spasms diagnosis and treatment journey, and explains how these experiences inspired a children’s book designed to help newly-diagnosed families and those around them better understand infantile spasms.
Kate Kostolansky first noticed her daughter Charlotte repeatedly making a strange movement shortly before Charlotte’s second birthday. After sharing a video of the movement with Charlotte’s pediatrician, Kate was reassured that it was nothing to be concerned about. However, the strange movement continued, and, as an admittedly nervous first-time mother, Kate requested a referral to a neurologist. The neurologist quickly diagnosed infantile spasms with a late onset at nearly two years old, confirming the diagnosis with an EEG. Kate shares the treatment journey that followed, its impacts on Charlotte’s physical and cognitive development, and the early intervention therapies that Charlotte underwent to address developmental delays. Kate explains how a second round of treatment finally eliminated the spasms and provides an update on Charlotte’s health situation today. Finally, Kate shares how Charlotte’s journey spurred her to write a children’s book entitled “Char Bear Keeps Dancing” and her plans to get the book into hospitals and ultimately in the hands of newly diagnosed families to help them navigate their child’s infantile spasms diagnosis and treatment.
You can learn more about Char Bear Keeps Dancing here: www.charbearkeepsdancing.com
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[@Emootzesnoc]

Looking forward to it!

[@rachx2396]

I've got epilepsy and my daughter had infantile spasms from 3months. I thought it was a startle too at first ☹️

[@CUREepilepsy]

It is not easy to live with epilepsy and it is heartbreaking to see a child experience Infantile Spasms. Your experience reinforces our commitment to fund research to find a cure. Thank you for sharing your experience.