Genetic Testing To Predict Diabetes: Yes or No?

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Just a few months ago, shortly after I began to introduce solid foods to my baby Adam’s diet, I noticed a fruity smell on his breath. Almost any mother in such a situation would have said to herself, “I’ve just fed my son banana-and-apple mush, therefore, he smells fruity.” My reaction, however, was different. I leaned in close to Adam’s face, sniffing at his breath the way I sometimes sniffed at his rear to check for a dirty diaper. He grabbed my cheeks and put his mouth on my nose as though I were inviting him to nurse from my nostrils. If I hadn’t been panicking at that moment, I would have smiled.

I was panicking because, as a type 1 diabetic who is married to a type 1 diabetic, I am very much aware that fruity-smelling breath can be a sign of diabetic ketoacidosis, a life-threatening condition that occurs when there is no insulin in the body. Fruity-smelling breath can, of course, also be a sign of having eaten fruit.

Since we’re both diabetics, my husband Mike and I are hyperaware of symptoms of undiagnosed type 1 diabetes, which include unquenchable thirst, frequent urination, weight loss and blurred vision. And so, when once in a while one of our three sons is thirsty, makes an extra trip to the bathroom or looks a little thin, we become stricken with fear. On one occasion, I waited for the children to fall asleep and then whispered to Mike, “Did you notice that Guy asked for a second glass of water?”

“It was a hot day,” Mike said. “He ran around outside for hours.”

“Right,” I said.

Then next time, it was Mike who worried after Tom came home from school and announced that he couldn’t stop peeing all day. In child-speak, that probably meant he had to use the bathroom twice. For us, it meant grab the glucometer and check his blood sugar.

Glucometers, blood-sugar test strips and insulin pens litter our house. My sons probably know more about type 1 diabetes and the paraphernalia that goes with it, than most health care professionals. Type 1 diabetes, an autoimmune disease that destroys the insulin-producing cells in the pancreas, is not only a chronic illness, it’s an illness that necessitates constant attention – not unlike a newborn. A healthy person’s pancreas pumps out insulin – the hormone that converts glucose into energy — in perfect doses, according to food intake. A type 1 diabetic whose pancreas produces little to no insulin, has to guess how much synthetic insulin to inject each time she eats. Not taking enough insulin means high blood sugar – which has long-term devastating effects. Taking too much insulin causes hypoglycemia, which can lead to unconsciousness and even death. So every bite of food is counted, insulin is dosed, blood glucose measured. My sons watch as Mike and I do this.

“Do you do anything besides diabetes?” Tom has asked.

“Of course,” I’ll insist with obviously false cheer. Nothing escapes Tom’s notice. He is aware of our constant calculations, and he is old enough to understand that even though diabetes is undetectable from the outside, something on the inside is very wrong with his parents. He asks questions.

“Is your blood sugar O.K.?

“Yes, Sweetie,” I say. “Don’t worry about me.”

“Did you remember to take your insulin?”

“Of course,” Mike says. “Don’t worry about it.”

“Am I going to get diabetes?”

“No,” is my answer. Though I’m small and my voice isn’t strong, I try to make my “no” sound authoritative, not a “no” that sounds like I’m hiding the truth. Not a “no” that suggests insecurity. I want it to be a “no” that erases the question from his mind completely. I would like to erase it from my mind, too.

There are blood tests that can predict whether a person will develop type 1 diabetes, but there is no proven way to prevent the disease. Even without any testing, I know my sons are at greater than normal risk for getting diabetes since statistics indicate relatives of people with type 1 have a 10 to 15 times greater risk for developing the disease than people with no family history.

Mike and I often ask each other if we should screen our sons for diabetes. Sometimes it seems like the right thing to do. Other times it doesn’t. While I write this today, I’m leaning against it. I can make my own predictions about my sons, not about whether they will be diabetics, but about who they will be as adults in the world. I know their likes and dislikes. I know they may grow up to be mathematicians, but not basketball stars. In the emotional realm, I know deeply and intimately who my sons are as a whole. To test them for diabetes — to know the components of their blood — would be to know them microscopically. It would place cold scientific data between a mother and her sons that, because of its imprecision, would neither alleviate my fears nor confirm them.

Though I may not test my sons, I will continue to monitor them. When I feed them, I’ll check their plates to see what they’ve eaten. I will notice when they go to the bathroom and when they drink. I’ll do it all with my basic senses, as far the eye can see and as far as the nose can smell.

Originally posted in Motherlode on NYTimes.com

Jessica Apple is co-founder and editor-in-chief of ASweetLife.  She writes the blog The Natural Diabetic.

Comments (2)

  1. Kassie at

    My only regrets over NOT enrolling our sons in any sort of trial to get genetic testing are around not contributing to the general knowledge about diabetes and how it develops.  Those regrets are mild, and don’t outweigh subjecting them to invasive tests.  As far as knowing that diabetes was coming, I have no regrets.   Right now the only therapies for stalling diabetes are still in the trial stage and you have to be at least 8 years old to participate (and they don’t stop it from developing).

  2. aurea at

    I am a type 1 diabetic as well.  I have two children Ava 4 and William 3 and I count all drinks, every trip to the bathroom, smell their breath, and occasionally their urine.  I live in fear of what I don’t know and work very hard to make sure they don’t see that.  I have raised them with a lifestyle and diet that will accommodate the illness if they were to develop it and wait for the unknown.  I held my son when he was an infant with this overwhelming sense that it would be him.  He is his mommy on the inside, from microscopic veins to restless sleep patterns he is me on the inside.
    I believe in genetic testing.  I want to do it.  I want to know the odds.  I haven’t done it yet because of those microscopic veins.  Why do I?  Because not knowing that we have a fighting chance I live as if it is only a matter of time.  They can’t go to the bathroom without me counting and there is no such thing as just a glass of water.  if I know that they have the D3 and D4 genes and they are 40 – 50% more likely to get it, then I can continue doing what I do now.  However, if they have the protective genes then maybe I will be able to stop visually measuring fluid intake, output, skin tone, etc.  Maybe I can just live for today instead of dreading tomorrow, at least some of the time.
    Aurea

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