To Test Or Not To Test

WRITTEN BY: Kimberly Ford

In the darkness Monday night I sat up in bed, hot and clammy. Why? Because I’d heard my fifteen-year-old daughter waking up to go pee.

It was her older brother’s night-waking—five and a half years ago—that convinced me and their dad that all wasn’t well.

As I listened to her padding down the hall toward the bathroom, I was sure we were about to become a family whose entire fridge was stocked with insulin, whose kitchen was one big “diabetes drawer,” whose mother spent all her “free time” downloading meter data.

None of this felt easier when she came into the kitchen Tuesday afternoon and said, “I peed like six times at school today. I am SO thirsty. I think I need to check my levels.”

A child in the “normal” population has a 1 in 300-400 chance of developing T1D.
Our kids’ chances are 1 in 20.

Not only do we know this, but researchers and clinicians can use a simple blood test to tell, with 90% accuracy, if a person will develop type 1.

Different people have different ideas about whether or not to test the siblings of kids with T1D to see if they will develop the disease.

My friend Anne waved a hand on my front porch and said, “I do NOT want to know.”

My friend Sarah—who has her kids enrolled in TrialNet like I do and who has them tested with an annual blood draw—said,

“You just really want to know.”

People argue that there are clinical trials you can enter to forestall the onset of disease.

People argue that you run less risk of an incident of ketoacidosis if you know the disease is developing.

People argue that sitting by, waiting for the thing to become full-blown sounds completely terrible.

Last Tuesday when Aidan came into the kitchen guzzling water and asking to test her levels, I found myself reacting a little more strongly than usual. Maybe because this threat, unlike most of my catastrophic thinking, has a firm foot in reality.

Maybe because I remember a mom saying that her son’s diagnosis wasn’t the worst day of her life, her second son’s was.
“All right,” I said, moving across the kitchen to the “Diabetes Drawer.” I like to think I managed to sound perfectly blasé when I said, “Let’s test you up.”

My daughter made a face as I put a new lancet in one of the backup blood glucose meters. “Ooooh!” she said. “Yikes.”
“It doesn’t really hurt,” I said, though we both knew it did, a little. I secured the little cap and cocked the spring-loaded tab like Will does ten times a day. “It’s no big deal.” I demonstrated, pressing the tool to my third finger and pushing the button.

A burning electrical stab radiated through my hand. I stared at the growing drop of blood even as I kept my expression neutral.

My daughter, who hadn’t sensed my pain, said, “I just want to test for ketones. Can I do that instead?”
“Sure. Good idea,” I said—thinking, as I pressed my thumb hard on the fingertip to make the throbbing subside, that it was one of the best ideas I’d heard in a while.

I handed her the canister of strips that measure ketones in urine, another way to see if her pancreas had stopped functioning the way it should.

The toilet flushed. Our daughter emerged with the strip held high. “Normal!” she called.

She headed toward the TV and turned it on. I didn’t say, “Uh-uh! No way! Turn that off till you’re done with homework!”

The afternoon suddenly felt like a vacation. Like summer. Like I had been given a much larger reprieve than I would ever want my kid to have to experience.

From across the room my daughter flopped back onto the couch and said, “I’m all good.”

Learn more about TrialNet screening.

Kimberly Ford

Kimberly is the author of a nonfiction book as well as short stories, essays and articles that have been widely published. Although her son’s diagnosis with T1D six years ago meant her writing career took a slight detour, she admits that diabetes occasionally offers up great writing fodder. Kim also serves as a consulting editor for Beyond Type 1.