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…..

 

 

 

Comments (10)

  1. Theodora at

    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.  

  2. Sarah at

    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 few more and dose for the total. Generally speaking I think that the less said about food the better. No need for guilt or angry words over a few grapes. ‘-)

  3. Moira at

    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 foods with insulin whenever carbs are involved. But …. your kid is just that, a KID. And things are going to happen, sometimes without you knowing and yes, sometimes by your choice. For instance, I was at the hospital during my daughter’s diagnosis for that week of learning and it was Halloween. Wouldn’t you know it: they were making giant frosted cookies in the activity room. And my daughter wanted IN. I saw those cookies and thought ‘IT’s the giant cookie of DEATH!!” I called over to the CDE in the hospital and asked her what to do. here is what she said:

    “Let her go in there and be a kid .She can make a cookie. She can eat it. She can choose not to eat it. She can lick her fingers. She can gobble it. And then, later, we’ll check her blood sugar and correct. It’s going to be okay …. let her be a kid. That is what insulin is for.” 

    And she was right. That was the beginning of me trying to say ‘she’s a kid … it’s okay if sometimes she is high.” And it is. Let’s say your child ate a bunch of grapes. That’s not going to send them into a coma. It might make them high (even higher than 300) but a short time high is not a big deal.

    I am NOT saying just let them go nuts, but I am saying that learning to relax more about food is just better long term. Your child has a long road of an unusual relationship with food. The best thing you can do on that road is help them NOT obsesss over it, not worry about it and know that really: they CAN have anything they could have before diabetes. And if they have something without insulin, you can fix that later.

    It’s your intense and wonderful love of your child that has made you so worried — we parents all totally get that. And this reaching out with your story, I think, means you realize you have to change something.

    Change the message in your home from “Food police” to “the same as before with some minor tweaks.” Let your child eat or drink what you would if diabetes was not on board. Do your best to get them to tell you when they want something (becuase the answer is never going to be “no” again), and if they do have some food without telling you, just check, smile, correct, smile and move on.

    Happy to help you more if you’d like. And hang in there. My daughter has not always had it easy but she’s lived a rich, full and adventurous life, all with diabetes on board. Your child will as well.

    Oh and one more thing: your sibling child has guilt already. Go easy on her if she gives your child food as well. She just loves her brother and feels like she wants to make things “better.” 

  4. Maureen at

    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 (or looking on the website), there would be a carb count.  Now it isn’t the healthiest choice for anyone but there is no reason you can’t cover it.

    Your son feels lousey when he is high, or low.  He does not want to be either of those things (or that is my highly educated guess).  I always made carb counting and bolusing correctly a game.  If I want to eat something, I find out/guestimate the carbs, then bolus.  Then I re-evaluate how it worked.  If it was something I truely enjoy eating and it did not work bolus wise, that just means one thing.  I need to try again and try something different with my bolus (more, less, combination bolus, exc).  Point out how he is negatively feeling from being high/low.  Ask him (or explain the logic) what could be done differently so his blood glucose does not spike/dip next time.  Then after that (or whatever you guys decide to do on the next attempt) when you try the next attempt, verbally say “okay, look at how this worked better (or worse), and now you probably feel better (or worse)” No judgement.  Just looking at the pieces of a puzzle/problem and making a game of finding the ‘best’ solution.  I rarely make any food ‘off limits’ altogether. It might be a ‘special treat’ but that is it (that is for myself included).
    My kids have separate bowls for snacks.  They are free to get them, but I have a count of what is in the 4.5 year old when it goes out (and both are good about eating from their own- I generally have snack bowls sitting out on the counter ‘ready to go’ then they just grab them when they want it). I count when they are ‘done’, and in my case I know if more needs to be consumed. Once again, I verbally tell my son “Are you feeling good now?” And if he answers yes, I say “It is because you ate enough for the bike riding/playing on the playground/exc” or if he says no I will say “Next time you can try to eat/drink more and hopefully you will feel better. You drank X amount this time, next time we will try Y” I make it a point to make him aware of when it IS working and how he feels at that point as well.
    Also, have you tried a continuous monitor? There are still issues with them, but from my experience with the Dexcom, they have come a far way, and it is an awesome tool for letting me know if I’m tracking up or down, how quickly, and in general where I’m at.

  5. Moira at

    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 

  6. michelle at

    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 good choices. 
    As a parent, I know there are many times I have to pause and think “Okay, connect before you correct” and I am sure that applies to these tough issues parenting a child with diabetes.  A great book to learn more about healthy attachment and dealing with sensitive kids or sensitive issues is “connected parenting” by Jennifer Kolari, a social worker in Toronto.  I heard her speak and love her approach.  I think if you convey your pride in everything Sasha and Tessa have to contend with, you can also encourage them to make good choices.  
    As parents, I think our patience wears thin when we are being hard on ourselves.  So I am sure any frustration with Sasha stems from your own overwhelming sense of worry and responsibility for making everything “right”.  You have to manage that righting reflex…. there will be lots of high BG’s and lots of lows.  You can’t prevent that.  You need to notice your successes and move on from the tough days…. I know that is the way I enjoy my life with diabetes.  Good luck James!  

  7. James Ron
    James Ron at

    Thank you, Moira. What a lovely and helpful set of comments. It is so inspiring and helpful to hear from other parents who have been through similar struggles, and come out successfully on the other side.

  8. James Ron
    James Ron at

    Thank you, Michelle. Great set of comments, and very helpful.

  9. 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 this and tried it, but thought I would pass it along, since it has worked well for us.

  10. Kris at

    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 too, so her HBA1C is much worse than when we were in charge of things! But we hope it’s just a phase… I often think it is the pressure from the diabetes doctors, endos & nurses that make parents go overboard and panic about their kids’ diabetes results – trying to always meet the standard narrow band of BGLs is immensely difficult for parents, and for our kids as they become independent. We need to give the kids, and ourselves, a break sometimes, so we don’t drive them, and us, crazy.

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