Kellen’s epilepsy diagnosis came at 20 months old. The EEG showed that he was having seizures in the left side of the brain, on average, 10 times an hour. Most of them were so mild and brief that they went undetected. 6 months after starting medication, this had reduced to about 2 times an hour, with almost no clinically noticeable episodes.
Shortly before his third birthday though, Kellen had his first tonic-clonic seizure. It was horrific and terrifying. His second came 2 months later, but after that, he had none for 10 months. His focal seizures became more noticeable with age, but they didn’t seem to debilitate him. He recovered very quickly and was a happy, energetic kid. We tried to get better control by changing meds again, but it didn’t help much and made him irritable and lethargic.
But then, everything changed. I came into Kellen’s room as usual but quickly noticed that he was in a tonic-clonic seizure. It was bad—he was blue, eyes rolled back, in a pool of vomit and foamy saliva. I called 911 and sat there, helpless, watching the life draining from my little boy’s body.
The paramedics arrived, and it was clear they were very concerned. As the ambulance sped away, I had to wake my other 2 children and get them in the car to drive to the hospital. When I got there, though, they wouldn’t let me see him.
Eventually, a doctor told me to come sit in a conference room. I knew it was bad. They told me Kellen’s heart and breathing had stopped in the ambulance, but they had been able to get him back after 4 minutes. This, combined with the fact that his blood work indicated he was severely hypoglycemic and in lactic acidosis, which they told me meant the seizure was likely very long, meant there was high risk of brain damage. But we wouldn’t know until he woke up…if he woke up.
He did. He woke up. My incredible, strong boy woke up and he fought. He had to relearn walking, talking, eating, and many other things, but he never gave up. The seizure did cause permanent damage: at 8 years old, Kellen has the mental age of a 4 year old. He struggles with emotional regulation, social skills, executive functioning, speech, motor skills, and academics—but he’s also a wonderful, affectionate kid and I wouldn’t trade him for the world.
With age, seizures have increased in frequency and severity. He has tonic clonics once every month or two, and his focal seizures happen 2-10 times each week, lasting anywhere from 5 seconds to 5 minutes. Right now, we are looking into surgical options and a vagus nerve stimulator. But whatever comes next in this journey, I will be by Kellen’s side.
A cure for epilepsy would mean no one would have to live in fear of seizures.