My name is Hayden, aka “FlyBoy”. People call me “FlyBoy” because I LOVE airplanes! Everything airplane related and I love to travel. In fact, my mom tells me that my first word was “airplane.” I want to be a pilot when I grow up. I am 9 years old.
I was adopted at birth and my mom and dad fell madly in love with me at first sight. My early years were fun filled and I went to preschool and kindergarten and made lots of friends. But when I was practicing for my kindergarten graduation, I fell off my chair on the stage and had my first Grand Mal seizure. I was 5 years old. From that point on my life changed forever. After continuing convulsing seizures that forced me to miss my kindergarten graduation and go the ER numerous times, the neurologist had me undergo all kinds of scary tests. I was diagnosed with epilepsy; this means that my brain has sudden and uncontrollable electrical “storms” that cause my body to go into massive convulsions.
The doctors gave me a drug called Keppra, but all that did was make me speak slowly and slur my words, or worse, my brain knew what I wanted to say but the words wouldn’t reach my lips. The seizures continued, and I became so frustrated that I talked about dying. My parents got me off that medicine right away. Once I stopped Keppra, my parents said they could see my sparkle and personality come back, even though the seizures continued. My journey to find a control for my seizures has continued for several years since then, with numerous powerful drugs like Topamax, Depakote, Neurontin, Onfi, Zonegran, Klonopin, etc., being tried to with little success. And all of those drugs gave me really bad side effects that my parents couldn’t bear to see me endure.
All the medicines I was taking made it hard for me to learn at school, and I repeated 1st grade. Unfortunately I was having so many seizures (and different types, from tonic colonic to absence to drop seizures where I would just collapse and get hurt), that I now have to be home-schooled and wear a helmet. I’ve ended up in the hospital numerous times because of seizure “clusters” (seizures occurring as often as every 5-10 minutes) that my parents couldn’t stop with rescue medicines that were given to us by my doctors. The doctors did more tests on me, and said that I was having hundreds of seizures per minute inside my brain that couldn’t be seen because my body wasn’t convulsing.
My parents also tried a specialized diet where I was allowed very few carbohydrates. That means I can’t have anything with sugar (no cookies, cake, ice cream, etc.), or numerous other foods that we take every day for granted (no bread, cereal, pasta, potatoes, milk…). My mom had to measure my food portions to ensure that I’m getting the right amount of fats and calories. It seemed to help a little bit, but my seizures were still happening every night and day.
In April 2013 my Neurologist asked my parents if they would consider medical cannabis to help my seizures. She could not write an Rx for it, but she suggested my parents look into it and research it if they wanted to. Within two months I started CBD oil. Within a week my parents could see a difference in the length and intensity of my seizures. By August 2013 I was on the waiting list for Realm of Caring’s CBD product called ‘Charlotte’s Web’. I am hopeful I will get to try it this summer.