Thursday, August 27, 2020

In Which I Break All the Diabetes Rules and I Like It

 When Kittygirl was first diagnosed with diabetes I was overwhelmed with all the details. Carb counting and insulin ratios were super confusing, and we were told they weren't even going to stay the same all the time. I measured everything, and I mean everything, with carbs, down to how many tablespoons of ketchup Kittygirl was eating. I snuck a measuring cup and a gallon size ziploc bag into the movies in my purse so I could measure exactly how much popcorn Kittygirl was eating the first few times we went to the movies after she was diagnosed. I would do exhaustive online searches for carb counts for restaurant food whenever we ate out and I freaked out if Kittygirl didn't eat every crumb of her meal. 

When we had our diabetes education class at the clinic (as opposed to the basic overview we got in the hospital) we were told things that turned out to be kind of conflicting. They said our kids could eat anything as long as we/they counted the carbs and dosed insulin for it. They also said we should try to keep their blood sugar in range as much as possible. The one thing they did caution us against was liquid carbs. In fact, the notes they gave us said in all caps NO REGULAR SODA. They said that the sugar in regular soda acts too fast for the insulin to cover it and that first the child's blood sugar would go high from the soda and then low as the insulin hit and the sugar in the soda was done acting.

Three and a half years into diabetes (which doesn't make me an expert, but whatever) I am here to tell you that I've thrown most of that advice out of the window.  The first thing I discovered, after Kittygirl started wearing a Dexcom CGM, was that eating with diabetes and controlling blood sugar is not in any way, shape, or form as simple as counting carbs and dosing insulin before eating. I've learned that different foods act in Kittygirl's body in different ways. You wouldn't think this would be revolutionary, but the average diabetes education class does not make this clear.

Kittygirl still throws back at us the fact that, in the hospital, the nurse told her she could still eat anything as long as she got insulin for it. That was further compounded by the fact that, when I've talked to her classes at school about diabetes I've wanted to emphasize that kids with T1D can, in fact, eat sugar and said that she can eat anything. It turns out that's both true and false, if we want to maintain good blood sugar control. I have yet to find a type of food that Kittygirl absolutely cannot eat in some amount at some time. The big difference is, there are many foods that we only allow in limited amounts at limited times. It's a big science experiment in which we have to figure in the number of carbs in a food or drink, how quickly those carbs will act, what Kittygirl's current blood sugar is, what time of day it is, what else she's eaten that day, how active she's been and is going to be, and half a dozen or so other factors sometimes apparently including the position of Mars in relation to the moon it feels like. This really annoys her.

If all the stars are aligned correctly, we've dosed exactly right, and Kittygirl has not been unusually active or inactive, she can eat a large, dense donut from our favorite local donut shop and only experience a small rise in blood sugar.


If the starts aren't aligned correctly, I dose it wrong, Kittygirl is more or less active than usual, or any one of a dozen or more other things go wrong, Kittygirl's blood sugar may go down to 50 and then up to 350 with one of these donuts.

If I just followed the rules I was taught, however, that would always happen. Unfortunately, the fact that diabetes is best managed dynamically taking a huge variety of factors into account is not often taught. I'm so thankful that we discovered teachers such as Gary Scheiner and Dr. Stephen Ponder early in our journey of parenting a child with diabetes. We are far from perfect, but I think we would be more frustrated and our daughter would have a poorer quality of life and a poorer outlook for her future health if we hadn't done research into good diabetes management ourselves and also if we weren't willing to experiment and learn specific things about how diabetes works for our particular kid,which is not always the same as it works even for another kid of the same age, size, and gender.

Earlier this summer, I even discovered that the all caps NO REGULAR SODA rule can, in fact, be broken under the right circumstances. Now, would I just hand my kid a bottle or can of regular soda with no thought? Of course not, but I've learned that half a bottle of regular soda with a meal does not affect Kittygirl's blood sugar in a significant way. This happened because Ale8, which is a Kentucky staple, produces a special orange cream flavor that's only available in the summer and doesn't make it in diet.

Orange is Kittygirl's very favorite flavor in the whole world and she desperately wanted to try it. I let her have a few sips last summer when the flavor was first introduced, but she wanted her own bottle this summer. I looked at the carbs, thought about it, and decided she could have half a bottle with a relatively low carb meal. It worked well, so we did it again. I now know that even the all caps rule can be broken under the right circumstances.

There are still diabetes rules that can't be broken. You can't not take insulin, even if you eat a very low carb diet. You can't not check your blood sugar if you want to have any hope of keeping it in range. You can't just eat anything you want anytime you want without thinking about it.

You can, however, ignore the old fashioned static management rules that too many endos still teach as long as you replace them with dynamic management rules that actually work better.

2 comments:

  1. Tell her to swear off a food she loves in protest, until there is a cure. When I was Dx'd in 1974 the peanut buster parfait was a recent addition to the my local dairy queen. I swore I would never have one (oh I so wanted one) until I was cured.

    well 46+ years later, I still have never had one. Damn it if they cant cure me I will not support such copious amounts of sugar. Oh an yes, I can have whatever I want, it is because I choose to not do it.

    Now my daughter in law has orders to stuff one in my feeding tube when I am going south. She is the only one who has the will to do it. So I know for certain DQ has been deprived my money in protest, and yet I will get one in the end. :)

    Tell her the protest is a pro tip, to sustain ourselves.

    ReplyDelete
  2. I'll tell her about your suggestion, though I'd be surprised if she decides to follow it. I can't see her giving up a food she loves in protest. She may jokingly give up something she doesn't like, like chocolate ice cream :).

    ReplyDelete

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