Tic Toc

A few weeks ago, Kai’s OT, Emily, asked me why Kai was rolling his head from side to side. I watched him for a moment and saw what she was talking about—every minute or so, Kai would swing his head to one side and then the other, like you might if you’re trying to crack your neck. You know. If you were into that.

I had never really seen this before, but I my guess had been that he had water in his ears from being at the pool that day.

But that was not the case, or, if it was, he’s had water in his ears for a month, because that head roll has become constant.

“He’s still doing that?” Emily asked the next time we saw her.

He was, in addition to his other habit of tucking his shirt into his armpits with his thumbs. Emily had him take his shirt off to see what he would do with his hands without his shirt on, like maybe his shirt was too big or was otherwise bothering him in some way.

He does it even without his shirt on.

This behavior started last spring. It was his special ed teacher who pointed it out. Her hypothesis was that he had swampy armpits. I don’t want to deny that this is a possibility, but after spending a week camping with a child whose late-summer bathing schedule can accurately be described as nonexistent, I can attest that his armpits are not swampy.

No, this is something else.

:::

A quick Google search led me to the probable culprit, as quick Google searches can do when they’re not informing you that your daughter has either dermatomyositis or meningitis while you’re on the bus to the Minnesota State Fair and can do nothing but yoga-breathe and wait for your daughter to either spontaneously die or be perfectly fine.

Kai takes a cocktail of pills every night, to sleep, for his allergies, and for his ADHD. Kai's medicine can, according to the Internet, exacerbate tics.

We went to see his neurologist on Tuesday. This is the doctor that prescribes Kai’s sleep and ADHD medications.

I told the neurologist, a man who charges me for phone calls involving adjusting Kai’s medication and who types everything I say into a computer—slowly—and then charges me in 15-minute increments, about our summer, about the development of the head-roll.

The doctor typed quietly for a good 15 minutes after I was done talking (ca-ching).

“I think you guys are doing pretty well,” he said brightly, grabbing a ball off of his desk and tossing it to Kai, who caught it and threw it high and fast over the doctor’s head so that it bounced off the wall and landed on his computer.

“Hey!” the doctor said sharply, clearly annoyed.

“What about the tics?” I asked.

“Do they interfere with his daily life?” the doctor asked. He tossed the ball back to Kai, who threw it against the ceiling.

“I mean, if his thumb is tucked into his armpit, he can’t extend his arm,” I said.

The doctor was unimpressed.

“If the tics get worse, there is a medicine that we can add to the mix,” he said. “It decreases the tics and helps with the ADHD. But I’d prefer not to give him even more pills.”

This was too frustratingly reasonable, and I was secretly glad when Kai beaned the good doctor in the head with the ball.

“Hey!” the doctor said again. I watched him fight to regain his composure.

“I like that he’s so playful,” the doctor said finally, putting the ball in a drawer.

We agreed to keep an eye on things, and, before Kai could cause any more damage or before another 15 minutes could go by, I stood to go.

“Come on, buddy,” I said to Kai, who tucked his shirt into his armpits, rolled his head from one side to the other, and followed me out the door.

Comments

[Wendy Nawara]

I've been following your wonderful Kai stories for some time. I'm not even sure what led me to you initially, but I've really enjoyed his hi-jinx and your always level headed take on it! :) I wonder if what Kai is experiencing is PANDAS/PANS. The incidence amongst kids on the spectrum is pretty high. I run the Illinois based PANDAS/PANS Advocacy and Support non-profit and would be happy to talk to you about it. You can look us up at pas.care or on FB at PANDAS/PANS Advocacy and Support.

[Megan]

Hi, Wendy! Thanks for the suggestion. I will be following up with you!