The Disease is So Rare.

In addition to having ADHD, Dylan has a rare disorder called Reactive Airways Disease.

It’s much less harmful than it sounds. It means that, for most of his young life, when Dylan got a cold, he did not get a runny nose like the rest of the kids. Instead, he was plagued with a cough that wouldn’t go away.

The “disease” is so rare that most doctors couldn’t figure out what was wrong with Dylan. We started trying to figure out the problem when he was only a toddler.

He would start coughing at night – and he would cough, hard, all night long. It went on for hours and hours and hours, and he was so little. I was afraid he was damaging his lungs, or his throat, or both – or more.

Not only did he cough all night, though, he coughed for six months. He started in mid-autumn and coughed straight through until spring, every single night.

“It looks like allergies,” the doctor said. “Since he’s so young, let’s skip the painful allergy tests. Let’s give him a dose of allergy medication and see if it helps.”

Oddly, allergy medication did help. Sort of. Sometimes. Looking back, I have no idea why it we kept him on it.

When I took him off the allergy medication – after two years – Dylan seemed more agitated, less able to sit still.

The allergy medication had been sedating his ADHD behavior!

But we didn’t know he had ADHD yet. And we didn’t want him on medication when he didn’t actually have any allergies. So, since he was older, we had him tested for allergies and asthma. He tested negative for both.

I was actually the one who discovered the term “Reactive Airways Disease” on the internet, as Dylan coughed away at night. I took Dylan to see the doctor for the zillionth time. His pediatrician was out of the office and the substitute doctor – a woman I’d never met – said that she had Reactive Airways Disease, and she was pretty sure Dylan did, too.

They gave him an inhaler to be used at night when the cough started, and it miraculously stopped the cough before it went on for months. So we were sure that Dylan had Reactive Airways Disease.

Or at least … he did when he was younger.

As he got older, occasionally he would get a runny nose. It was very exciting at first, because Dylan seems to be outgrowing the disease that caused him so much havoc for so long.

Recently, when Dylan gets a cold, he sometimes gets a runny nose, just like the rest of us. And he doesn’t cough through the night anymore.

But one day, he woke up with chest pain. It hurt when he took deep breaths. He looked fine, and it was morning, so I told him to go on with his day. Then I called the doctor, just to be sure.

The office assistant answered my question. “Take him to the E.R.,” she said.

Dylan was just sitting with his phone, texting. He was fine. “The E.R.?!” I asked. “Why?”

“If he has chest pain and difficulty breathing, he needs to be seen right away.”

“It sounds worse than it is,” I said. “Why can’t I just bring him to you?”

“You can,” she said. “If his color is okay, and his breathing is okay, you can bring him to us.” So I did. Dylan got a thorough check-up.

The doctor, who knew Dylan has reactive airways disease, said, “He’s probably coming down with a cold.”

Sure enough, it was just a cold.

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