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 Every Snack Is an Existential Dilemma

Raising kids is hard. Raising a kid with a chronic health condition is a whole new level of hard. In case someone who's not a Facebook friend of mine and therefore fully educated in type 1 diabetes (hereafter referred to as T1D ) thanks to my daily posts every November (diabetes awareness month) reads this at some point, I'll take a moment to explain what T1D is. T1D is an autoimmune condition wherein, for reasons scientists don't yet fully understand, the immune system treats the insulin producing beta cells in the pancreas as foreign invaders and begins attacking them. Eventually it incapacitates enough beta cells that the body can no longer produce enough insulin to turn food into energy, and to function in general. The first written record of diabetes stretches all the way back to ancient Egypt, and it's probable that it was present well before that. Before the discovery and manufacture of insulin in the 1920's, diabetes was invariably fatal. When I was growing up, kids with T1D (then called juvenile diabetes) had to eat on a strict schedule and were told to avoid sugar. Thanks to advancement in both insulin formulations and diabetes technology, people with T1D can now live almost normally. They key word in that last sentence is ALMOST.

When Kittygirl was diagnosed just over 2 1/2 years ago now, we were given a crash course in diabetes care in the hospital. There were a whole lot more details, but the basic outline is that we were told that we needed to carefully calculate the total carbohydrates in all the food she ate and then give her an insulin shot based on a complicated formula including her carb to insulin ratio plus her correction ratio if her blood sugar was above the target level. Because she was still fairly young (6 years old) they recommended giving her the injection after she ate. We were to check her blood sugar before she ate and two hours after eating. If her blood sugar was high two hours after eating, that meant that her ratios might need to be changed.

That all sounded complicated, but totally doable. Little did we know that was just the tip of the iceberg. It turns out there are at least 42 factors that affect blood sugar. Some of them are related to what's happening inside a person's body (for instance, growth hormones will often cause a child's blood sugar to spike overnight). Others related to external factors acting on the person, such as stress or excitement. Vigorous exercise that occurred yesterday can affect a person's reaction to insulin today. And then there's the fact that, contrary to what we were told in the hospital, not all carbs are created equal.Some digest quickly and it's best to give insulin 10-20 minutes before you eat them. Others digest slowly and only part of the insulin needs to be given before they're eaten. In fact, I've found that, in Kittygirl's case, there are a few foods that don't raise blood sugar until many hours after they're consumed.

Just a few months into our diabetes journey Kittygirl started wearing a Dexcom continuous glucose monitor (hereafter known as a CGM). That gave us a startling window into what was happening with her blood sugar in between the times we had been pricking her finger.  As a general rule, what was happening was that her blood sugar was spiking really high between meals. There are endocrinologists and others in the diabetes community who insist that this is unavoidable and totally fine, just part of living with T1D. However, we weren't willing to accept that. We discovered a method of dynamic diabetes management known as Sugar Surfing and began to experiment with timing insulin and trying to minimize blood sugar spikes and keep the CGM graph as smooth as possible.

Fast forward two years, and we're still living in a science experiment while trying to make our daughter's life as normal as possible. In theory, Kittygirl can eat like a normal kid. She can eat anytime she wants to and eating sweets is totally permissible. In practice, we're walking a tightrope between trying to make sure she doesn't hate diabetes and trying to keep her blood sugar in range as much as possible. At this point, most days we stay on the tightrope more often than we fall off it, but there are still plenty of times we fall off. Every single bite of food that goes into her mouth involves a calculation of how many carbs are in the meal or snack, how fast or slow the carbs will digest, and what her activity level has been recently and will be in the near future. This is particularly tricky when it comes to snacks. Sometimes I've messed up the bolus (insulin dose) for a meal and Kittygirl's blood sugar is high an hour afterward but she's hungry again. Do I make her eat something low carb that she doesn't really like, or do I give extra insulin along with insulin for a regular snack and hope her blood sugar doesn't go significantly higher? Either choice has potential pitfalls. Even if her blood sugar is in range, I need to carefully evaluate how that snack is likely to affect it and what impact it could have on the rest of the day (or night in the case of afternoon or evening snack). I could just say no to anything that I know is hard to dose for, but then I'm afraid she'll hate me and hate diabetes, and as a teenager she'll rebel and stop taking insulin altogether (this is a thing that happens sometimes, unfortunately).

A perfect example of this dilemma happened yesterday after school. There's a little coffee and ice cream shop a block from Kittygirl's school, and we've made a deal that she can get a snack there once a month. Her favorite thing to get, which is, of course, the hardest thing to bolus for, is an orange shake. I have so far never once succeeded in dosing that shake correctly. No matter what I try, her blood sugar always goes high and stays high for hours. I tried to convince her to get something else, but she really, really wanted the shake. Her blood sugar had been in range all day and I figured, "Well, maybe today will be the day I succeed." Spoiler alert: it wasn't. Her blood sugar climbed really high and stayed high all afternoon and evening long, despite a dinner with easy carbs and multiple correction doses of insulin. First I got angry. Then I made myself calm down and told Kittygirl that I was done trying with the particular food for now, and that I would find an alternative way to make her an orange shake at home with ingredients I understood better. She was willing to settle for that compromise for now, but we'll see if she still agrees next month when it's time to get a treat at the ice cream shop.

The majority of scientific evidence tells us that, if a person with diabetes has good average blood sugars (which Kittygirl does), and if the standard deviation is 1/3 or less of the average blood sugar (which Kittygirl's usually is), that person is very likely to avoid serious diabetes complications and an occasional extreme blood sugar spike is not a big deal. However, we've chosen not to be satisfied with meeting the minimum threshold to probably avoid serious complications. We want to give Kittygirl the brightest future possible, and we believe that one of the ways to do that is to control her blood sugar as well as we can during this phase of her life when we have a lot of control over what she eats and what she does. We're attempting to do this in a way that's not super restrictive and doesn't make her intensely resent us or resent diabetes. Our hope and prayer is that she will emulate our methods more often than not as she gets older and takes more control of her own diabetes care and faces her own existential dilemmas about what snacks to eat and when.