Hurricane Sterling is my 7 year old epilepsy warrior and a patient at Cleveland Clinic. Diagnosed in Feb 2020 just before covid lock down, at 6 years old, our worlds have been completely turned up side down. I never expected how detrimental this disease would be to my marriage, my friendships, my job, my mental health, my other kids, and my poor helpless son. We lost everything to our names in 2020, and are trying to rebuild. This disease has only progressed from our initial diagnosis, it now consumes our lives 100%. Despite multiple medications, he averages 3 horrible seizures a day. He has multiple seizure types, and we have been averaging a week in the hospital a month. He is 24/7 supervision, and can not attend school anymore. We have lived in Toledo, Ohio for the last 8 years, but We have decided to spend some time in Louisiana (our home state) to get help from our family & friends with my 2 other kids, and Hurricane Sterling. Hurricane Sterling is currently on:
Vimpat-150mg 2x a day = 6 pills. Topamax-175 2x a day = 6 pills. Depakote- 125mg 2x a day = 2pills. (Just started the depakote Thursday, with only a 3% chance of working)
Effer K- 15mg 2x a day dissolved in liquid. Diastat rectal gel 7.5mg- rescue med. We give at seizures over 3 minutes and more than 3 than 3 seizures in an hour. Given about 3x a week. Some of this doses are higher than adults. Sterling has acidosis (ammonia) is his blood. This is induced from these high levels. This is what the what the effer k is for. It helps keep the high levels down. Sterling has tried and failed these aeds:
Keppra
Lamictal
Trileptal
This is all to attempt to give him-
“quality of life”. We havr tried and failed, many other alternative options. Please follow along on our journey as i share our daily lives with this horrible disease. We are now preparing to go to Cleveland Clinic in August for the final testing for the possibility of brain surgery or the vagus nerve simulator, and our hope to raise the money to get an epilepsy support dog! paypal- macy419@icloud.com
venmo- macy-courville-1
zelle- macy9466@gmail.com
