Meet Kiegan - An Awesome Doose Warrior

Kiegan

Age of onset: 2

In 2015 my life changed completely. Kiegan hit his head at the laundry mat causing a concussion and a 7-minute long seizure. The doctors thought it was just a one-time thing put him on medicine for a week and after the medication ran out Kiegan started having more seizures and that’s when he got diagnosed pre epileptic. After several tests all coming back normal, I still had no answers. Several years later still searching for answers we went to a regular well check with his neurologist and he was acting strange just like I told the neurologist. Instantly she grabbed Kiegan’s specialist and they admitted him hooked him to the EEG and he had seizures hooked to the EEG finally. The third day at the hospital his specialist came in and diagnosed him with Doose and my mind went blank. He looked like he was a million miles away it sounded gibberish and my heart sank. It’s been about 2 years since Kiegan’s diagnosis, failing medications after medications 5 medications total. keto failed, on CBD oil Epiodilex and he’s now failing that. I live in constant fear of SUDEP for Kiegan. We are getting a second opinion now because there were talks of adding another medication and I feel he needs to be re-evaluated. I feel something more can be done. Kiegan has 1-10 seizures a day currently.

 

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