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 the First Book I Recommend to People New to T1D

Disclaimer: This is an unsolicited review. I purchased this book with my own funds and am reviewing it simply to provide more information to someone who might be interested in reading it. I have received no compensation of any kind for this review and all opinions are my own.

Some other parents of type 1 diabetics have shared with me their experience of spending anywhere from three days to a week in the hospital with their child receiving very thorough diabetes education. They have said it was like drinking from a fire house. They learned about everything from the biological mechanisms behind diabetes to tips on what to feed their child and how different types of activities could affect blood sugar. This was not our experience.

Mr. Engineer and I were given just enough information to safely bring Kittygirl home and keep her alive. We are curious researchers by nature (Mr. Engineer especially) and we wanted to know much than the basics of what to do to avoid killing our child. An Amazon search turned up the book Think Like a Pancreas by Gary Scheiner, MS, CDE.

Gary is a type 1 diabetic himself, as well as both a certified diabetes educator and an exercise physiologist. He heads up a diabetes practice known as Integrated Diabetes Services. It is located near Philadelphia, but Gary and his employees help people from around the world remotely.

I own the edition of the book that became available in early 2012. It is the second edition, and a third edition is scheduled to be available on Amazon in May of 2020. I imagine the new edition will have updated sections on the pumps, continuous glucose monitors, and new insulin formulations that have become available in the past 8 years, but I'm sure the substance of the book will remain the same.

This book gave us the diabetes education we wished we had gotten in the hospital. The plus was that we were able to digest the information at our own pace when we weren't in a stressful environment with our child hospitalized. For that reason, even those who have received a thorough education upon their own or their child's diagnosis could benefit from this book.

Gary begins by telling the story of his own T1D diagnosis and the path that led him to become a diabetes educator and an exercise physiologist in part to take control of his own diabetes management. In the next section, entitled, "What's the Dang Diddly Point?", Gary details why taking control of your diabetes treatment and trying to keep your blood sugar under control is important.

This book starts at the beginning, detailing the different types of diabetes (spoiler alert: there are more than two) and what happens inside the body of a person with diabetes.

There are sections detailing different types of insulin regimens as well as the many factors that can affect blood sugar. There is even a resource section at the end of the book.detailing places to get support, helpful books and blogs to read, and more.

This book is a treasure trove of helpful knowledge. Gary's down to earth writing style makes it very approachable and easy to read. In contrast to some other books I've read that discuss scientific and medical issues in detail, this book is clearly written for the diabetic or caregiver of a diabetic with no special medical knowledge.

If you're new the the world of type 1 diabetes, or you've been in it for a long time but you don't feel like you truly understand why this disease acts the way it does, I highly recommend picking up a copy of this book.