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rule breaker

I’m doing some things with Madeline’s diabetes management that I should not be doing.

Owning up is a little risky. People know that what I write here is not intended to be perceived as medical advice, and yet, we in the Diabetes Online Community rely on each other’s been-there-done-that perspective on a wide variety of matters. I feel compelled to proclaim my deviance: the things I am doing don’t seem *wrong* to me, even though they often go against The Advice of a Licensed Medical Professional. It’s not that I believe I know it all. It’s certainly not that I have figured out the keys to successful diabetes management. No, it’s none of those things… I’m just a mom with a child with T1, experimenting with strategies, and finding that some of them work <for us> even though our CDE would never endorse them.

I don’t always test Madeline’s BG before she consumes carbs.

On average, Madeline endures nine BG tests every single day, and her pin-pricked fingers and toes tell the tale. Over the summer, I allow her to return to her preferred grazing eating pattern, which means she frequently eats small amounts of food. So, if I have tested her BG within 1.5 hours or so of when she wants to eat, then I simply enter the carbs she consumed into the Ping, using 100 as the BG reading so that the bolus can be calculated.  There are exceptions, of course, such as circumstances in which I expect her BG level to fluctuate rapidly. But on a “normal” day, with “normal” BG trends, I don’t always test her before letting her eat.

Note: I don’t let other people break this rule. So when Madeline’s in school, or when Daddy is in charge of her treatment, her BG is always tested before noshing.

I don’t usually follow the “rules” dictating an infusion set change when Madeline’s BG is persistently high. 

The guidelines we are supposed to follow dictate that when we obtain two consecutive BG readings of 250 or higher, we are supposed to correct using a syringe and then change out the infusion set using new insulin. I rarely do this, because Madeline is persistently high (above 250) quite often. There are so many circumstances that trigger BG highs for Madeline: a scheduled infusion set change, illness, growth spurts, heat, stress, and consumption of higher-fat meals (specifically anything with lots of cheese). Not only that, but her body becomes more insulin-resistant with a higher BG reading. Madeline hovers in the 200s-300s so frequently, that it seems unreasonable to me to suspect that a failing infusion set is the likely cause. If I changed out her infusion set every time we hit 250 twice in a row, we’d be changing out her set multiple times a day on some days.

Although this strategy has occasionally backfired on me, I have found over time that patience in these situations usually yields evidence that the infusion set is, in fact, working. If I ride out the highs with corrections and a temp basal, we usually avoid “strike three” as I call it (getting 250+ three times in a row). Once we get to Strike Three, then I usually resort to a set change and start the process all over again.

We don’t (yet) rotate infusion sites as much as we are encouraged to do.

Madeline is a creature of habit; she learned to cope with infusion set insertions using the “high” parts of her hips and bum, and is not willing to try other locations. Once we used her lower belly, but she did not have enough padding there to make it a comfortable place to have a set. She refuses to use her arms, period. So, we go back and forth, from one bum side to the other. Thankfully, we have yet to have issues with overuse.

For the record, we are gently working on a goal of site rotation using her arms. When she meets with her support group, she always notes where her friends have their sets inserted (which usually happen to be the upper arms). She has recently decided that she wants to try a different infusion set, which in her mind might make upper-arm insertion more palatable for her. Stay tuned…

I bolus Madeline after she finishes eating.

The goal here is to bolus for food as soon as noshing starts, or even beforehand. Folks, this requires my 7-year-old to be certain, well before she is done eating, how much she and what kinds of foods she will consume. Pre-bolusing has never worked for us. Every single time that I did so, Madeline ate far less than she predicted she would. Then, I’m scrambling to shove carbs down her throat to match the now-too-much-insulin in her system. Ever tried to feed a child who does not want to eat or drink? No bueno. The best we can do right now is to bolus her for carbs as soon as the gobbling has ceased.

I monkey around with the insulin dosing program too soon.

I am a data junkie. I keep detailed information every day about BG readings, carbs consumed, set changes, activity level, ketone checks, dosing times, dosing amounts. I’m continually encouraged to study data for patterns that persist over three days, and to make changes at that point, but not sooner. I do try to follow this rule, actually. I know that changes take time to make an impact, and if changes are made too quickly, or too many changes are made at once, it can be quite difficult to figure out what intervention triggered what response.

But hey. When Madeline’s BG is persistently too low or too high, I usually do not wait long to make a change. First up is usually a temp basal setting. If the Crazy Train just won’t stop, I’m usually making dosing program changes by day two of a data study.

The Rule of Fifteen? Yeah, not so much.

Rule of thumb when treating hypoglycemia is to administer 15 carbs, wait 15 minutes, then test again. If the reading is still low, start the process again. This does not work for Madeline for two reasons. The first is that her system is incredibly sensitive to carbs. She most often needs one unit of insulin for every 10 to 12 grams of carbs consumed, warranting a bolus if she has more than that. So… if I’m treating a low during daytime hours, I usually give her about 10 grams of carbs, or instead just let her eat something hearty and then bolus her for it (using the low BG as the reading on which the bolus is based). I don’t even always use a “fast sugar” to treat a milder low, especially if she’s not distressed. At night, though, I do use a 15 gram carb and it’s always in the form of a fast sugar (in our case, 100% juice). Even though I know her BG will rise higher than I’d typically like to see, at night this strategy becomes more protective than harmful.

The second reason that we break this rule is that it usually takes longer than 15 minutes for Madeline’s BG level to rise after being treated for a low. So, unless her low is particularly unnerving (below 55, or she’s distressed about her symptoms), I usually wait 20-25 minutes before retesting her—even at night. I’ve learned that waiting a little longer usually yields an ample rise in her BG level while also avoiding the panic-induced overtreatment of the low.

I don’t restrict Madeline’s carb intake.

No fruit for you! Too many carbs.

When Madeline was first diagnosed, we were firmly directed to limit her carb intake to specific limits for all meals and snacks. Unfortunately, the nutritionist we consulted with operated under the premise that a carb is a carb is a carb. Now, to be fair, this person did share information about the USDA’s opinion of a “balanced” diet and portion sizes. Because I sometimes have trouble keeping my mouth shut, I politely informed her that I follow the guidelines of the Mediterranian nutrition pyramid, not the American version, and then I posed a question.

Me: So if the carb count is the most important bottom line, then it stands to reason that feeding Madeline pepperoni and cheese every day for her morning snack would be more acceptable than feeding her a banana and some whole wheat crackers.

Nutrition Lady: Well, from a nutritional standpoint it would not necessarily be better, but from a carb standpoint, yes, that is correct.

Me: Huh. Well, I’m not eliminating whole foods from Madeline’s diet because she’s a diabetic now and because of a misguided “carb limit” guideline. Or, at least that is what I think I said. My mind was seething with the insanity of such advice.

Look, carbohydrates are not all the same. There is a huge difference in the way that the body metabolizes specific kinds of carbohydrates, and wide variation in the type of nutritional content contained in carb foods. Please do not expect me to believe that eating pepperoni and cheese is preferable to bananas and Triscuits. I do not accept, in the name of “saving carbs,” that feeding Madeline processed foods laden with chemical sweeteners is better than feeding her homemade foods containing real food sweeteners. So, no, I do not limit her carb intake. I do, however, monitor the kinds of carbs that she consumes. Unless her BG level has been stubbornly high for hours, I really could care less if she eats 35 grams or 99 grams of carbs at a meal—so long as those carbs are most often derived from whole or minimally processed foods. This ensures that the carbs she eats are complex: they give her needed nutrition, metabolize evenly and slowly, and don’t leave her starving in an hour’s time.

 

What rules do you break, and why?

 

 

 

 

 

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About Heather Garcia Queen

I am… a mother of 3 spectacular children. A wife of an architect extraordinaire. An MSW. A psychologist in an elementary school. A (wishful) writer. A protector of family and spirit. A worshipper of the natural world. A seeker of knowledge. A lover of the arts. An introvert. A silver-lining kind of girl.

Discussion

13 thoughts on “rule breaker

  1. I think I break just about every one of those “rules” as well. Call me a rebel. I do bolus before meals though, but Justin is 11 and he knows he has to eat what we bolus for. When we are at parties or whatever… I will not fill his plate as much. It works for us.

    But everything else… Yep, I’m a rule breaker.

    Posted by Lora | 06/27/2012, 6:16 pm
  2. Glad to be one of many visitors on this awesome web site : D

    Posted by Diabetes Insulin Pump | 07/09/2012, 2:25 am
  3. I am crying sad/happy tears and have only read this far “I don’t usually follow the ‘rules’ dictating an infusion set change when Madeline’s BG is persistently high. The guidelines we are supposed to follow dictate that when we obtain two consecutive BG readings of 250 or higher”…because THIS IS what I was just describing to a friend. I am at a picnic table outside of camp in a secluded but still public space at Brown. After three 250+’s, I gave B a new site. He was LYING ON THE PICNIC TABLE WITH PART OF HIS BUM SHOWING. It was so sad. I didn’t make him take a traditional injection. I didn’t want him to cry in front of his friends. Possibly baring part of his bum to a passerby is nothing to him but crying…

    OK! I can’t wait to keep reading! Lucky me I am only 1/5th through the post!
    Thank you.

    Posted by Katy | 07/10/2012, 4:28 pm
    • Diabetes cares not where we are or what we are doing, it’s neediness just has to be met. Maddy would rather do a public site change too. Just did one tonight, in fact, in the car in the parking lot at Target. Stupid me did not remember that her cartridge was low and do we ran out of insulin and decided to change the whole thing rather than just do a fill-er-up because her site was suffering the effects of beach sand. How’s that for a run-on sentence!!

      Posted by hmqueen | 07/10/2012, 10:50 pm
  4. “I bolus Madeline after she finishes eating.” I HEAR YOU. I just learned this thing from Gary Think Like a Pancreas—you can bolus up to 45 min. before they eat as a “down payment” (do you like Gary’s banking lingo? for some reason it resonated with me) say on…30 carbs or whatever you’re sure they’ll eat. (For dinner, I am 100% sure B. will always eat 40g, if available.) Then you “pay the balance” after you see what they actually eat. Our endo will not like this 2-bolus strategy, but I do. If it’s good enough for Gary Think Like a Pancreas, it’s good enough for me. This is helping with post-meal BG spikes. Oh ugh. I feel like a dude, giving advice in a comment.

    Posted by Katy | 07/10/2012, 4:34 pm
    • Thanks for sharing this! I have considered doing this but it has felt a little risky in terms of the chaos in my house–what if I forget to finish the bolus?? But, it may be time to try this strategy out.

      Posted by hmqueen | 07/10/2012, 10:46 pm
  5. Sorry so many comments. I’m convinced that 15/15 rule is to keep things simple for newcomers who might kill their child if it were more complicated. We treat a 65 with 4g. Maybe even a 60 with 4g if one of us is close by. AND THAT ANTI-BANANA CARB PERSON! Grrr. The only thing a standard hospital dietician and I could agree on is a graham cracker with peanut butter and a string cheese.

    Thank you for this concise, calm, explanation of all of these crazy rules and issues! I got kind of excited about this post. You can tell.

    Posted by Katy | 07/10/2012, 4:38 pm
  6. My favorite rule to break is the Rule of 15. Someone made that up just to be a terrible person, as far as I’m concerned.

    Posted by Jacquie Paul Wojcik | 07/10/2012, 5:13 pm
  7. So, I’m 30 years into this. And I break every. single. one of those rules. And I know my mother did too. And you know what? Uncomplicated (knocking wood). Also, I don’t cover the tubing of my pump when I shower with one of those little cover things they give you with the pump, I never change out my lancet unless I’ve used it at least 40 times, and every so often – I give myself a day where I only test twice or three times (I tend to turn down the basal on those days, so I know I’m likely hovering high, but sometimes you just need a break!). This post made me smile big, by the way.

    Posted by Nicole p | 07/11/2012, 9:11 am

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