I am a 16 year old with epilepsy. I wasn't born with epilepsy, but developed it 8 years ago. My first seizure woke my mom in the middle of the night. Being a nurse she knew exactly what was happening, but also knew that there could be many reasons for the seizure.
After a trip to the local ER, I was released after a couple of hours and told to see my regular doctor. The next day on our way to the doctor, I had my second tonic clonic seizure within 24 hours. We didn't know at the time, but I had also had multiple partial seizures in that time period. We didn't realize that deja vu was me actually having partial seizures. My mom felt guilty like she should have known, but as we know even us with epilepsy learn new things about it daily. So began my journey of unsuccessful medications and increasing and worsening seizure activity.
I am blessed with a family who encourages me to life my life as any other 16 year old. They encourage me to follow the cues that my body gives me and with their support and the willingness of my coaches and teachers to learn about epilepsy, we have found what works well for all of us. My last tonic clonic seizure led to me being transported by ambulance from the game I was cheering at to the hospital. I was then admitted into the PIMU for testing. After 2 days, I was seizing approximately every 30 minutes. My partial complexes are now so long that the team would not even allow me to go into tonic clonic.
Finally, we did receive some information we had never had before. First, my Neurologist called personally to let us know that I would be switched to an Epileptologist. Secondly, the Head of Neuro came to tell me that I had scar tissue very deep in my temporal lobe. Third, I would be introduced to a Neurosurgeon. WHOA!!! I'm 16!!! Neurosurgeon??? I had MRIs before (yes, the 4D kind) and no scar tissue had shown. So, now the question is was the scar tissue always there and has caused the seizures or do the seizures still have no known cause and have caused the scar tissue? I will begin testing this month to determine if I am a candidate for a lobectomy.
My current focus however, is raising awareness and research funds for epilepsy. My testimony has had approx. 4500 views in a few days. My hope in sharing is that other kids and teens newly diagnosed will realize that epilepsy does not have to define you. It may redirect you sometimes, but it is not who you are. It is only a part of you.
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