Calvin is my 8-year-old son. He’s funny, loving, and smart with beautiful blue eyes. He was diagnosed with autism 2 months before his 3rd birthday, and that brought with it challenges and triumphs. He worked hard in speech and occupational therapy and made great strides. By the time he started school, he had made so much progress that we decided to have him in a general education classroom (with support).
Epilepsy entered our lives shortly after Cal started pre-k. He was playing on his tablet on the couch while I was playing with his younger brother. Suddenly, I heard a horrible scream. I ran to Calvin to see him in a full tonic-clonic seizure, eyes rolled back, shaking, roaming at the mouth. I called 911 and held my boy as his little body convulsed and turned blue.
He had luckily stopped seizing by the time paramedics arrived. At the hospital, the doctor told us it was likely a febrile seizure. His temperature was 99.8 degrees Fahrenheit, but we were told that since it was slightly elevated, it might have been higher when Calvin had the seizure. We were informed that the seizure did not warrant significant concern.
A mere 4 days later, I got a call from his school. A call I will never be able to forget. “Calvin’s having a seizure, can you get here quickly?” I nearly crashed the car trying to get to my boy. He was still seizing when I arrived. It had been 11 minutes. Paramedics had been called at the 5 minute mark. I don’t remember much after that. I do remember hearing the words “epilepsy” “EEG” and “medication”.
A week later we were told his EEG had been “mildly abnormal” and we met a neurologist for the first time. We received medication for Cal and started to accept his diagnosis. A month went by without any seizures. Then another. Then we began to forget that epilepsy was even there.
But then, he started having another kind of seizure. His arms would briefly jerk into the air and his eyes would roll back, and then he would fall to the ground. The whole thing only lasted a few seconds each time. We caught it on video a couple times and sent it to Calvin’s neurologist. He was diagnosed with Doose syndrome, a rare form of epilepsy causing myoclonic-atonic seizures. New meds, new side effects, next round of epilepsy’s cruel game.
We realized he had also developed absence seizures and gelastic (laughing) seizures during one of his EEGs. The absence seizures are subtle, so we thought they were part of his autism. The gelastic seizures are just laughter—who would guess that a child’s laughter was a seizure? He may have been having them since before his first tonic-clonic seizure. About a year ago, when he was around 6 ½, he started to have focal seizures. Every time his seizures change, or he develops a new type, it’s extremely frustrating and scary. He’s been hospitalized 4 times for really nasty seizures.
A cure for epilepsy would mean that I didn’t have to worry about whether my son’s laughter was really because he was happy.