Our son, Eli, was diagnosed with epilepsy at age 5. He is currently 15 years old. He has had fine motor and developmental delays since he was born. He never had complete seizure control. When he approached adolescence, his seizures increased dramatically to at least one per week. We had difficulty controlling his seizures and his behavior became more and more erratic with the increased anti- seizure medications and frequent seizures. After more testing, we found out last year that he has a genetic disorder, which was helpful to explain many of the symptoms he has had, but upsetting because we knew the seizures would not be outgrown.
I am undiagnosed. I have been fighting epilepsy, apparently, my whole life. I believe I have Lennox-Gastaut syndrome, which makes my story... interesting. I have had identified, undiagnosed "episodes" for 21 years. The impact these episodes have had on my life is only now beginning to be understood, even be myself.
To many, this is just a kid on a bike. Simple, right?
I can remember a boy who used to be terrified to leave the house, who couldn't go to the bathroom by himself, had fits of rage and had so many seizures every day that he couldn't finish a sentence. I can remember the day he decided to get on a swing. It was just one week after we started to use CBD. It was like meeting our kid for the first time. Just playing a game or drawing a straight line at 7 yrs old was impossible. It devastates parents and families as well...deeply.