The Seizure, the Specialist, and the Showdown

The Seizure, the Specialist, and the Showdown

Back in July, Noah had what appeared to be a seizure. Since then, I have shared our ongoing saga of trying to get straight answers from both Noah and the medical world. Getting information out of Noah is like trying to interview a goldfish, and getting his original EEG results has been equally challenging. So, when the opportunity came to see a specialist at Johns Hopkins for a second opinion, I grabbed it.

Shane came with me because I knew this visit would require backup. Managing Noah in a medical office is a two-person job. Minimum.

Noah was on his best behavior until the nurse came at him with the blood pressure cuff. Then it became a three-way standoff: Noah versus Shane and the nurse. There was some serious negotiation, a touch of bribery, and a fair amount of noise, but in the end, the adults walked away victorious. Barely.

The doctor was kind, experienced with kids who have Down Syndrome, and clearly knew what he was getting into. He asked Noah several questions, some answered, some ignored, and some responded to in what I can only describe as “Noah-ese.” Then he moved on to what he called “tests,” but what Noah quickly recognized as “games.” Suddenly, Noah was all in.

At one point, the doctor turned to us and said, “He has very good upper body strength.” Shane and I just nodded. Oh yes, we know. We have seen Noah do more crunches during a 30-minute TV show than I have done in my entire adult life. We also know that our 100-pound, 4-foot-8-inch son has, on more than one occasion, physically picked up ‘Pop’ Shane. He may be small, but he is built like a tank with a very low center of gravity. It is cute until someone tries to take his blood.

The plan now is a follow-up EEG, with support from a behavioral team at Kennedy Krieger Institute. They will assist Johns Hopkins, and hopefully, together they can manage to attach all those little head nodes before Noah decides to show off his strength again.

I am praying the seizure was just a one-time event. But with Noah, I have learned to expect the unexpected. The next appointment should be interesting. I will bring snacks, patience, and maybe a helmet.

Because when you have a Noah, every “routine” doctor visit comes with audience participation.