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.

In Which I Review a Book That Changed the Way I Look At Diabetes Management

Disclaimer: I purchased this book myself. I have not been compensated in any way for this review, and all the opinions herein are my own.

A lot of people are given seemingly inconsistent information when they are diagnosed with type 1 diabetes. They are told that they can eat a normal diet as long as they cover the carbohydrates with insulin. However, they are also told that they should keep their blood sugars within range as much as possible.

Unfortunately, with the static diabetes management style that is still most often taught by well-meaning endocrinologists and diabetes educators, it is impossible to avoid a large spike in blood sugar after consuming a typical carbohydrate loaded meal. If the insulin ratios are correct your blood sugar will eventually come back down into range, but it will inevitably be high for at least a couple of hours.

A combination of a static management style and a desire to keep people from having frequent low blood sugars leads to the current A1C recommendations of 7.5 for children and 7.0 for adults. These are well above the A1C for a nondiabetic, and they aren't even achieved by about 80% of people with diabetes.

Some have chosen to address this crisis by eating low carbohydrate diets. That is absolutely a viable solution that works well, and I'll review two books later this month that speak to that option and have provided relief and renewed health to many people with diabetes.

However, the choice is not between a normal diet with roller coaster blood sugars and a low carb diet with mostly in range blood sugars. There's a third way, proposed and used by an endocrinologist who is a long time type 1 diabetic himself: Dr. Stephen Ponder. Dr. Ponder calls his dynamic diabetes management style Sugar Surfing, and it has allowed many people to have lower and sometimes even nondiabetic range A1Cs and mostly in range blood sugars while eating whatever they want to eat, within reason.

The one essential tool for sugar surfers is a continuous glucose monitor (CGM). Some people find an insulin pump a useful tool as well because sugar surfing often involves giving more doses of insulin than you would give on a standard static management plan. However, that is a personal choice. Many people, including Dr. Ponder himself, have successfully surfed their blood sugar waves using multiple daily injections.

Dr. Ponder challenges type 1 diabetics and their caregivers to use their CGM graph as a tool to understand how food, insulin, and activity affect their blood glucose trends and then to act on that knowledge.

His writing style is conversational and easy to understand, despite the fact that he uses some medical terms and introduces all new terms (such as delta wave and shelf) related to sugar surfing. It's easy to read this book over a day or two (I read it for the first time over two mornings while Kittygirl was at VBS the summer after she was diagnosed), but you'll want to keep coming back to it to gain a deeper understanding of sugar surfing as  you continue your journey with diabetes.

I won't give away all the secrets of sugar surfing in this review. Get yourself a copy of the book (a free e-book is available for new diagnosed type 1 diabetics at the sugar surfing website). However, I will say that Kittygirl would not have an A1C and time in range that consistently impress her endo and blow away her pediatrician if we had not found this book and applied its methods. Dr. Ponder also gives seminars all over the country in which he teaches the methods in his book. You can find upcoming dates on the website.

All that, and we're actually pretty mediocre sugar surfers. We don't apply all the techniques consistently and we almost never takes notes about either successes or failures. However, even if you're not ready to apply everything in this book, just changing one or two things could make a huge difference in your or your child's diabetes management.

Think Like a Pancreas, which I reviewed last week, is my #1 recommendation for people to understand what having diabetes means. Sugar Surfing is my #1 recommendation for people who want to take the next step and take control of their diabetes instead of letting it control them. Sugar surfing well is not easy, and you will inevitably fall off  your surfboard on occasion. However, the results are well worth learning the techniques and putting in the effort.