Hi, my name is Alisza. I am 4 years old and I have epilepsy. I also have a condition called ESES, which is rare.
It all started after I turned 3 years old. My mom noticed some weird eye flickering once or twice a day. She thought she was crazy, then more started happening and someone else noticed. They took me to the ER, and doctors said they could not help. My mom was calling everywhere to try and figure out what it was. She called the pediatrician and he said he could do a checkup, yet still nothing.
Weeks were passing. I started getting worse. I started having up to 200+ seizures a day. We were going to the emergency room almost every other day, but the hospitals we live by did not know much about what was going on with me. They recommended me to a Cooks Children’s neurologist nearby. Finally we found someone who knew more about what was happening to me. She diagnosed me with epilepsy and wanted me to go get tested for autism.
My new doctor put me on medications, but they weren’t helping, so we kept trying different medications. Two months after being diagnosed, I started having different seizures. At this point I have eye flicking movements out of nowhere, seizures in my sleep where I turn blue, another kind of seizure where only the right side of my body is shaking and I get a paralyzed for a few hours after, 10+ minute tonic clonic seizures, absence seizures, and lastly head dropping with eye flickering.
Our neurologist recommended us to Cook Children’s Hospital in Fort Worth, TX. I have tried every medicine and treatments, and I have failed every single one. I now have to wear a helmet everywhere I go and my speech is not the greatest. Recently the doctor said I’m out of options and they don’t know what or where the seizures are coming from. They want to do the VNS stimulator, but it is not a guaranteed it will work.
Right now, I’m 4 years old and I’m tired. It would mean the whole world to me and my family for us to find a cure for me. I don’t want everyone to give up. If we can’t stop what’s going on in my brain, I will lose all my cognitive abilities. Please help me find a cure or other ways and opinions you think would help.