Hi! My name is Noel and, when I grow up, I want to be a pediatric neurosurgeon. My first known seizure was July 27, 2012. This seizure scared me a lot, because I did not know what it was. I had several seizures where I lost consciousness. They were terrible!! I was very scared, but Mom and Dad helped me to not be afraid.
When I had my MRI, I was a little nervous, but the hospital helped me by showing me a pretend MRI and helping me to understand what was going to happen. The MRI took a long time, but it turned out excellent. Next, I had my EEG at my neurologist’s office and those results weren’t very good. All during this time, I had several seizures that really scared me. They scared me, because I could feel them starting and I would feel dizzy and really sleepy.
In October 2012, I had a 48 hour video EEG. It was a really cool experience, because I was able to see my brainwaves on the computer all the time. Everyone at CHOA-Scottish Rite made me feel comfortable. I especially loved it when the child life specialist brought me in stickers to decorate the “sock” I had to wear over my hair to keep the electrodes on my head.
I have been on meds for a while now and they are okay, but I hope I can go two years seizure free, so I can possibly stop taking them. When I first started taking them, I felt very sleepy and I had a hard time concentrating. Now, I’m on a different pill and I feel all right. I’m very happy they are working well and I have been seizure free for almost six months!
Over the past two years, I have realized that having epilepsy doesn’t make you all that different, it doesn’t have to affect your life. I can still do all the things I used to do, so having epilepsy isn’t all that bad! I have to admit, there are times I don’t want people to know I have epilepsy, because I’m afraid they will count me out as the odd one of the group and that makes me very sad. I want people to know I have epilepsy, but epilepsy doesn’t control my life. I am a brave girl that wants to be seen just as that. I am NOT epilepsy, it’s just a diagnosis. A simple part of me, not all of me.