Pediatric Seizures and KCNA2 – Zax’s Story

​​​Christmas of 2018, Zax Doyle had his first seizure, caused by a genetic mutation called KCNA2. This led to many falls and tears for Zax and constant worry for his parents.

Wanting the best for Zax, his mom called Boys Town Pediatric Neurology and made an appointment to see Boys Town Neurologist Dr. Valeria Naranjo. It was this decision that showed her how big of a difference it can make to get the right care, at the right time, from the right people.

“The neurology department here, for me, means… life,” Amber Doyle said. “I mean, look at him! He can be a normal little boy because of the people that are here at Boys Town – because they cared so much that they wanted to do everything that they could to try to ​help him.”

And Amber means everything! From medication, to diet changes, to comprehensive therapies to help Zax reach his milestones, Dr. Naranjo left no stone unturned in her cutting-edge treatment plan.

Watch the story of Zax’s life-changing care below.

• Transcript

  Pediatric Seizures and KCNA2 – Zax’s Story

  It's been awesome being here to see him be able to run and jump and play. Zax can you roll me your truck? Oh yeah go! His very first seizure that I saw was Christmas Eve 2018. Ever since then, he's been having many of them and he still has some today, but just like you can't even notice. It's a genetic mutation called KCNA2. It has something to do with the pathways in your brain and how it uses potassium. It's some sort of diet based mutation. I honestly thought he was probably going to be like in a wheelchair or like in in some sort of mobile device that I would have to push around all the time and constantly keep my eye on him.
  

  Dr. Naranjo is amazing. She helped me like understand what the process was here at first. She definitely made it easy to come here because she actually cared. She started off by changing his medication, which was awesome. He's still on those medications and obviously it's working. Dr. Naranjo wrote a script for physical therapy, occupational therapy and speech therapy and also got him a helmet, which he doesn't have to wear anymore because everything is working so well. It's amazing.

  The keto diet she told me was originally created for people who had seizures, who had epilepsy and it'​s something to do with how your brain processes the fat that goes into your body. So when we started it, I was I was honestly extremely skeptical, um but uh one week on it, like not even one week and​ his seizures had dropped to what he was having before was still about with the new medication was still about 35 a day but they were really really quick. That went down to about 12, and now since he's been on it for about three weeks or so he has like maybe three. He's not upset all the time because he was constantly falling, constantly hurting himself, so he was constantly crying. He was just not a happy kid and now he's running, he can do normal little boy things and that's what I'm so happy about. I want him to be a normal little kid go to school and learn just like everybody else and be able to play sports and just run around and get his knees dirty.

  The neurology department here for me means life. I mean look at him. He can be a normal little boy because of the people that are here at Boys Town because of the neurology department and because they cared so much that they wanted to do everything that they could to try to help him. Dr. Naranjo was truly amazing. If I could, I'd give her a big hug.