Maddie

Hi! My name is Madilynn, but you can call me Maddie if you'd like. Let me share a bit about myself! I had my first seizure at 13 months old and was diagnosed with epilepsy at 22 months. Since then, I've experienced numerous seizures that I've lost count. Kindergarten was particularly challenging for me. I've been on many seizure medications to manage my condition.

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My journey started with neurology at a children's hospital in Peoria, IL, and later I was transferred to Barnes Jewish Children's Hospital in St. Louis, MO, where I've received excellent care. I've undergone EEGs and various tests, leading to my diagnosis of Doose Syndrome, specifically Myoclonic Astatic Epilepsy, in May 2020. This type of epilepsy can manifest in 5 different seizure types.

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To help control my seizures, I had a VNS (vagus nerve stimulation) implanted in October 2020 and a G tube inserted in February 2021 for medications and feedings due to the frequency of my seizures. In 2018, I started wearing a helmet to protect my head during seizures. In October 2023, I was life-flighted to Barnes Jewish Children's Hospital due to liver failure, spending 4 days in the ICU.

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I've had to make adjustments to my seizure medications multiple times when things weren't working as expected.