Cooper’s life was a battle from the very beginning. He was born preterm, which resulted in underdeveloped lungs and lifelong immunocompromisation. When he finally came home from the hospital, he was very fussy. He cried nonstop and fed very poorly. Doctors said this was normal given his challenging start to life, but I felt there was something wrong.
My suspicion was confirmed when, at five months old, Cooper started having what we later learned were seizures. He would suddenly stiffen for a second or two, and then cry a bit. It happened in clusters—he would have ten or twenty in the span of ten minutes. Again, doctors didn’t believe me.
When I finally filmed it, his primary care doctor said “this is textbook infantile spasms,” and referred us to a pediatric neurologist. Suddenly, we were facing a grim prognosis. We were told that most kids with IS will have a significant developmental disability and can go on to develop other forms of seizures in childhood. I grieved the life I had pictured for Cooper—and then I resolved to fight for him.
The first medication barely touched the seizures. The second helped, but caused lethargy and mouth ulcers. The third finally seemed to be a good fit—good seizure control with minimal side effects. By that time, he was almost a year old.
With reduced seizures, Cooper finally started to make some progress developmentally. He was quite delayed, but started to babble and try to crawl. We were hopeful that this was going to be the turning point. I learned that I was pregnant with a second child. Things were stable—good, even—but epilepsy just couldn’t allow that.
At 14 months old, Cooper had his first tonic-clonic seizure. He was down for a nap, when I heard some odd noises on the baby monitor. I came into his room to see my baby boy convulsing and turning blue. I grabbed him and got in the car. My husband drove us to the hospital, where they told us Cooper had experienced a febrile seizure. There was a good chance it wouldn’t happen again, they said. But I knew all too well that the seizure monster was far from done with my son.
Sure enough, two months later he had another. This time it lasted almost fifteen minutes and he did not have a fever. In the emergency department, I lost it. I was so scared and frustrated—why couldn’t epilepsy leave my sweet little boy alone? I cried and cried, begging the staff to make sure this didn’t happen again. They increased his medication dose and sent us home.
But it did happen again…and again…and again. Epilepsy is relentless. At two years old Cooper had tried 5 anticonvulsant drugs and been to the emergency room 8 times for seizures. He developed frequent myoclonic seizures that were triggered by almost everything. His neurologist recommended genetic testing. We would have done almost anything for answers, so of course we said yes.
The results came back positive—Cooper has two genetic abnormalities. One is so rare that very little is known about it, but for my son it is thought to cause bone problems, short stature, and possibly mild facial dysmorphism. The other is called SCN2A and not only explains his epilepsy, but also many of the other diagnoses he has gotten: autism, intellectual disability, global developmental delay, hypotonia, cortical visual impairment, and more.
When I got the news, I felt so many things. I was relieved to have an explanation, but it also felt like Cooper was being handed a life sentence of seizures and requiring care around the clock. There is no cure for SCN2A, just like there is no cure for epilepsy in general. That’s really scary.
Once we knew Cooper’s condition was genetic, we were immediately concerned that the baby was at risk of having the same thing. Luckily, his brother was born without any complications. He’s a healthy, happy toddler now. It’s a little hard watching him meet milestones that his older brother still hasn’t met, but we’re getting there.
Cooper, now four years old, does physical, occupational, and speech therapy. He has made great progress! He is walking and talking, and next year he’ll be starting kindergarten. His original seizure type, infantile spasms, have been replaced by an array of other unfriendly presences—tonic-clonic, absence, tonic, atonic, and myoclonic seizures have earned him yet another diagnosis: Lennox-Gastaut syndrome.
About a year ago, Cooper had one of his worst seizures. It was a tonic-clonic that lasted almost thirty minutes, followed by hours of nonstop myoclonics that wouldn’t let him rest. It took four different medications to finally pull him out of it. We knew something had to change.
By chance, a fellow epilepsy parent brought up diet therapy. She told us that her daughter, only a couple years older than Cooper, had uncontrollable seizures until trying keto. It sounded like the miracle we had been searching for. The first few weeks were tough—we had to stay in the hospital to see how Cooper’s body reacted to the change. “Keto flu” was the bane of our existence…until it wasn’t.
Since starting the ketogenic diet, we’ve seen a major decrease in seizures, and in turn a welcome increase in abilities. It is the best decision we have ever made. Though it isn’t a cure, it has given Cooper a better quality of life—and brought relief to the whole family. This journey is far from easy—Cooper has to work ten times harder for skills than other children—but epilepsy can’t keep this kid down.