There are so many things I could tell you about Zack. I could tell you how kind and generous he is, how much he loves sports, or how he volunteers at an animal shelter twice a week. But today I’m here to tell you about something you probably wouldn’t know about my son: Zack has epilepsy.
Zack had his first seizure at 11 years old. We were about to board a vacation flight to France when he told me he felt sick. I didn’t think much of it until a couple minutes later he swerved and walked straight into a wall. I looked at him to see that the left half of his face was twitching and his head and eyes were turned sharply to the side. I called my husband over as I helped Zack to the ground. He called for an ambulance as I tried to comfort my boy.
In the ER, Zack’s tests came back normal except for a slightly low blood sugar. We went home without answers. Two weeks later though, he had another seizure. He had automatisms during this one, where he was lip-smacking and having hand movements. This one lasted almost 3 minutes, and he vomited repeatedly afterwards. We were referred to a neurologist, who ordered an EEG, which came back abnormal, which prompted medication and a diagnosis: “right temporal lobe epilepsy”.
Sadly, the first medication didn’t work. He had a seizure at school soon after diagnosis. We tried a second medication, and then a third, but 18 months after his first seizure he was continuing to have seizures 1-2 times per month. That’s when surgery was brought up. Zack was a good candidate. He was almost a teenager by then, so we made sure that he was part of the decision.
As Zack was wheeled away into the operating room, I was filled with so many emotions. I was terrified that my son was getting brain surgery, but I also was filled with hope for a future with fewer seizures. Minutes felt like years in that waiting room. Then, finally, the surgeon came out and said the words I’ll never forget: “everything went great, you can see him in post-op.”
Zack had only one small seizure before a 483-day streak seizure-free. We thought we were out of the woods. We weaned him off of his medications. Epilepsy felt like an issue of the past. But that wasn’t true.
7 months ago, epilepsy roared back to life with a vengeance. He was at school during basketball practice when I got a call. “Zachary is having a seizure. We’ve called an ambulance, can you meet him at the hospital?” I felt my heart drop into my stomach. Time slowed down. How was this happening? I drove to the hospital to see Zack in the worst seizure I have ever seen him have. That day he had his first tonic-clonic, lasting 16 minutes. We learned what status epilepticus was that day.
When my husband arrived we sat in shock with our son. He was still unconscious, his vomit-soaked jersey replaced with a hospital gown. The on-call neurologist put him back on one of his old medications. Barely 12 hours after his seizure, literally as we were signing discharge papers, he had a focal seizure. It was brief, but it was as if epilepsy was sending us a message: “I’m back.” After this seizure, Zack couldn’t speak properly, which was new.
That changed the doctors’ mind. He wanted to run more tests, so Zack was admitted. That doctor’s decision may have saved my son’s life. That night, while sleeping, Zack had another tonic-clonic seizure. Nocturnal seizures are especially dangerous, and we had been lucky that Zack had never had them before. If he hadn’t been in the hospital that night, no one would have noticed him seizing.
The next day’s EEG gave us answers, but not ones we wanted. Zack was now having seizures in the left temporal lobe. Because the seizure focus included the part of the brain responsible for speech, surgery was not an option. We were devastated and terrified. We felt like giving up. What more could we do, anyways? Medication had failed, the only thing that had helped was out of the question. But Zack is such a strong kid. He never let us lose hope. “I can fight this,” he told us, “We have to keep trying.”
We found out that there was one last thing that could help. A VNS, or vagus nerve stimulator. Another surgery, but we were desperate. After a vicious insurance battle, the procedure was scheduled. Zack struggled through the months before with relentless focal and tonic-clonic seizures. 7 ambulance rides later, he got the VNS. It’s been 3 months since then. Zack’s seizures still aren’t fully controlled, but the VNS has made them milder, shorter, and less frequent. He has only had one tonic-clonic since getting it.
Zack’s recent seizures have affected his ability to read and write, so he gave me permission to write this for him. His teachers, family, classmates, friends, teammates, and coach have been incredibly kind during this time. They all support him during and after seizures. He can go out with his friends and I know they will keep him safe in case of a seizure. We have found such an incredible community of other families affected by epilepsy. I know that Zack has a bright future with a community rallying around him.
Epilepsy is, by nature, unpredictable. The only thing about epilepsy that I know for sure is that I am not going to stop fighting until there is a cure.