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

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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…..

 

 

 

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KrisKatie BaconJames RonmichelleMoira McCarthy Recent comment authors
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Kris
Kris

As a parent of an 11 year old with Type 1 (who was diagnosed at 3) I sympathise with the ups and downs of trying to keep your child healthy. We have 2 older children as well and they are also affected by all the attention we have to pay to diabetes issues, especially around food. Our daughter has never been much of an eater so we were lucky for years – until now she has hit puberty and is having massive growth spurts and eating massive amounts of food, often without telling us! She remembers to bolus only sometimes… Read more »

Katie Bacon

James, when you talk about bringing up  the lows and then battling the highs all night, we have had a similar problem with Bisi. The hospital had instructed us to give her 15 carbs of juice when she was low at night, which I found spiked her so high that I had to correct her later in the night. Then, after running it by her nurse, I started bringing her up with just 8 carbs at night, which (knock on wood) has brought her up to a more stable number in the mid hundreds. You probably have already thought of… Read more »

michelle
michelle

The first comment here really made me wince.  james is dealing with a huge challenge in managing his child’s diabetes and needs support, not judgement.  I myself live with diabetes, but have not had to face it with my kids, so i can’t really offer the same wise words as Sarah, Maureen and Moira.  I do know from counselling adolescents and adults with diabetes that PWD can develop a really dysfunctional relationship with food.  So i love the advice about helping CWD think about how they feel when they eat certain things and develop confidence in their ability to make… Read more »

Moira McCarthy

Sorry, one more addition: Strike some works from your vocabulary. Like these:

compliance
“good” and “bad”
regulated
“controlled”

 Even when we mean them in the best ways, they can mess with a child’s self esteem when diabetes is involved. Learned this lesson along with many others the hard way!

moira
http://www.despitediabetes.com 

Maureen
Maureen

It is great that both you and your wife, and really your whole family are dealing with diabetes. Background on me.  I have had diabetes since I was a teenager. My son has a medical condition that requires 2 daily injections, and has had issues with hypoglycemia since he was born.  The injections actually make the hypoglycemia worse. So I have to be aware of how much he ate, and what he is doing, and the 2 million other things that cause his blood sugars to drop.  He is 4.5 years old. The sugary drink your daughter got, if asked… Read more »

Moira McCarthy

Okay so, deep breath. And before anything else, giant cyber hug from a mom who has raised a girl with diabetes. My daughter was six when diagnosed and is now 21 and thriving, 500 miles away in college and happy, healthy and just full of joy. So here’s the thing (and I totally get how a parent can be scared into thinking the way you are … been there!): Food is not really the complete enemy we think it is. Well, it is in some ways, because now and until a cure, your child is going to need to match… Read more »

Sarah
Sarah

My daughter was dx’d at 4 and one suggestion I can make is to invest in some cute, colorful little prep bowls. When your son wants some little snack you can put 10 grapes in it, or 15 goldfish or whatever it is in whatever portion you think reasonable and send him on his way – it’s easy enough to go check the “status” of the bowl after a while to determine if they were actually eaten, or if they were left on the coffee table. Then you dose, and if he’s like a few more you give him a… Read more »

Theodora
Theodora

Wow. I’m not suprised that your children are crying “I hate diabetes” when the healthy boundry pushing of a six year old results in his  parents “exchanging some angry words with the kids about judgement, eating, and diabetes” and “parental anger and tears”.

You need to find a way to moderate your own behaviour before you seriously screw your child up.   

Before you get on your high horse, I’ve had type 1 for 25 years and I’m glad my parents didn’t display this sort of behaviour.  

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