Kids, Dietary Compliance, and Type 1 Diabetes: What a Mess

Over the last few days, I’ve begun to understand how fragile my son’s compliance with our eating guidelines really is.

Sacha is six, and was diagnosed at the age of two. Until recently, he’s been young and impressionable enough to (more or less) follow our rules. If we tell him to please not eat something without telling us, he’s largely done that. So much so, that over the past few years, I’ve realized that I don’t need to watch him like a hawk at birthday parties or gatherings with food. Until now, he’s accepted the unpleasant fact that eating and drinking are, for him, acts requiring adult discussion, judgement, carb counting, and insulin dosing.

This last week, however, two incidents made me realize how fragile this consensus really is. Over the weekend, Sacha’s nine year old sister Tessa and I went out for breakfast, and then picked up a sweetened iced tea drink that she’d been longing for. I was happy to buy it for her, as she rarely gets the treats she wants at home.

As we returned to the house, however, I reminded her to be careful not to let Sacha drink from her glass, as we didn’t really know how much sugar was in the concoction.

A few hours later, however, a routine blood sugar check revealed that Sacha was an inexplicable 350; after some discussion, my wife and I learned that Tessa and Sacha had secretly arranged to give Sacha some of the iced tea, and to not tell us. Parental anger and tears ensued. 

Only one day later, however, Tessa grabbed a plate of grapes after dinner, and ran with them into the living room, where she was doing cartwheels with Sacha. What a normal, innocent thing to do; she was thirsty and hungry, and a pile of freshly washed green grapes was just sitting on the kitchen counter. What kid wouldn’t want to grab the plate and go play?

My wife and I sucked in our breath, and exchanged worried glances. Trying hard not to hover, we calmly called to Sacha and asked him to keep track of the number of grapes he was eating while playing. 

Ten minutes later, he returned and announced that he’d eaten a whopping 32 grapes, roughly 30-35 carbs.

We were astonished. Sacha had never done that before; at most, he would take two or three, and then run to tell us. In fact, we weren’t even sure if Sacha could count accurately to 32; smart as he is, he’s only in kindergarten. His sister hadn’t counted for him; she was busy with her round-offs and splits. 

We didn’t know what to do. It was time for bed, and if we dosed him for 35 carbs and he’d in fact eaten only 22 or 12, he’d go dangerously low while sleeping. But if we didn’t dose him properly, we’d continue to have night time highs, something we’d been battling for weeks. 

What to do?

We dosed him for 32 carbs, after exchanging some angry words with the kids about judgement, eating, and diabetes. I glumly went to bed, preparing to arise at 2 am to handle the rest of the night. As usual, my wife took the first shift. 

Over the coming hours, Sacha indeed went low, as we feared. My wife corrected with juice, and by the time I’d taken over, I was battling highs for the rest of the night. We woke early the next morning, grumpy and exhausted.   

But the bigger issue is this: now that Sacha is getting older, the opportunities for eating without carb counting, or reporting to an adult, will multiple exponentially. We’ll have to try and maintain some kind of oversight and control, while also letting go, hoping that we’ve taught Sacha to care enough about his health to not hurt himself. 

But how can you tell a six year old that if he doesn’t accurately count his grape consumption, he might go into seizure or coma? Or that if he messes up regularly enough, he could easily damage his kidneys, eyes, heart, or nerves? We sometimes say these things, and then instantly regret them. Those are not messages that six year olds should have to hear. But we desperately want him to realize how serious this stuff really is. 

Sacha has begun to cry, “I hate diabetes,” and so has his sister. They are both beginning to understand how different their lives are from those of other children. Sacha, rightly, has a mind of his own, and Tessa, rightly, is angry that his disease imposes so many restrictions on her.  Surely, eating a grape without engaging in complex mathematics and technological maneuvers should be part of any kid’s daily routine. 

We didn’t realize how easy we’ve had it until now. As other parents of kids with Type 1 diabetes have warned us, the tough years really begin when the kids are old enough to do their own thing…..

James Ron

James Ron is an American, Israeli, and Canadian academic, whose son, Sacha, was diagnosed with type 1 diabetes in 2009 at the age of two. Until then, James had never heard of the disease. Today, James is a member of the scientific and advisory group of Life for a Child, an Australia-based charity that supplies insulin and other diabetes supplies to children and youth in the developing world. James teaches international affairs and human rights at the University of Minnesota, and lives in Minneapolis with his wife, Emma, and their two children, Tessa and Sacha.

James Ron

James Ron is an American, Israeli, and Canadian academic, whose son, Sacha, was diagnosed with type 1 diabetes in 2009 at the age of two. Until then, James had never heard of the disease. Today, James is a member of the scientific and advisory group of Life for a Child, an Australia-based charity that supplies insulin and other diabetes supplies to children and youth in the developing world. James teaches international affairs and human rights at the University of Minnesota, and lives in Minneapolis with his wife, Emma, and their two children, Tessa and Sacha.