Thursday, November 29, 2012

The Disney Diabetes Cookbook

Once Bisi got over the fear of the first night at the hospital, she actually had a great time. She felt pretty good. Now that she’d been diagnosed and was on insulin, her blood sugar was down closer to normal. This meant that her brain was no longer directing her to drink huge amounts of fluids to flush out all the extra sugar in her body. It also meant that she was able, once again, to get nutrients from her food. Insulin serves as a “key” to unlock cells and let them take energy from the food we eat. Because Bisi hadn’t been producing any insulin, her food was going right through her, which is why she had started losing weight.

Children’s Hospital also does a great job of making things as fun as possible for their patients. Bisi spent hours in the playroom, drawing, playing air hockey, making bead bracelets. She got to spend a lot of uninterrupted time with Mark and me, which was nice for all of us, despite the circumstances. Her roommate, a four-year-old girl diagnosed the day before Bisi with type 1 diabetes, taught Bisi to make a poster and place it on the window, so the construction workers in an adjacent wing of Children’s would make their own sign saying hello. Bisi also spent a lot of time making a rainbow “BISI” sign to put above her bed. She hates being called her real name—Elizabeth—and had to endure hearing it with each new doctor, nurse, or resident who entered the room. She hoped that the sign would set them straight.

But perhaps the most exciting thing that happened while she was there was that she was given Dishing it Up Disney Style: A Cookbook for Families with Type 1 Diabetes, published in conjunction with the Eli Lilly pharmaceutical company, the maker of the insulin Bisi needs with her meals. For a girl who’s obsessed with Disney characters, particularly Ariel, this was a thrilling gift. She immediately started paging through it and planning meals. We decided that on our first night home from the hospital, we would make Ariel’s Turkey Pilaf. Mark and I were thrilled too—the idea of cooking from scratch, which I do all the time, had suddenly become scary. How would we count all the carbs and figure out her insulin dose? This book counted them all for us, plus it was something that made Bisi feel special in a positive way. She kept on asking me, “Mommy, this cookbook is only for people with type 1 diabetes, right? It’s not made for anyone else.”

We made the turkey pilaf, and it was delicious. But as we started understanding more about carbohydrate counting and selecting more recipes from the cookbook, we became a little less enthusiastic about the hold the cookbook had on our daughter. A diabetic can’t process carbs without insulin. So the more carbs we include in Bisi’s meals, the more insulin we need to give her. It used to be that diabetics tended to be on severely carb-restricted diets. With the insulin regimen Bisi is on, the basal/bolus method, the idea is that she uses insulin on a sliding scale, to match whatever carbs she chooses to eat. But to us, it made sense that Bisi’s meals should healthy and relatively low-carb, so we wouldn’t have to be giving her tons of outside insulin. Yet the Disney cookbook was filled with relatively high-carb recipes like Prince Phillip’s Baked Potato Wedges (39 carbs for twelve pieces), Rapunzel’s Chicken and Biscuit Pie (35 carbs per serving) or Pinocchio’s Peach Raspberry Cobbler (45 carbs).

I know I’m being incredibly cynical here, but it was hard not to imagine Eli Lilly’s profits inching a tiny bit higher each time Bisi or another diabetic child ate one of the starchy and/or sugary meals in the Disney/Lilly cookbook.  After all, the more carbs someone eats, the more insulin she needs to process it.

Still, Bisi loves Ariel, and she loves the pilaf. I decided to adapt the recipe to make it a little more healthy and a little lower carb (I changed the rice to quinoa, halved the raisins, and upped the vegetables). I also made it gluten free by making my own pilaf seasoning mix (more on the gluten free later). We ate it last night, and while Bisi said she preferred the original, she polished off two bowls of the new version. 

Bisi’s Turkey Pilaf*

(Note, I’m including the very approximate carb count to give people a sense of things; I divided the total number by 8, and got 28 carbs per serving. I had never looked at a carb label or counted carbs in my life before Bisi’s diagnosis, but now, by necessity, I’m obsessed.)

1 onion (8 carbs)
4 carrots (27)
8 cups of fresh baby spinach (essentially no carbs)
1.25 pounds lean ground turkey (no carbs)
1 cup of dried quinoa (116)
2 cups of water
2 tablespoons butter (no carbs)
½ cup raisins  (62)
¾ cup pine nuts (12)
Salt to taste

1. In a large saucepan or dutch oven over medium-high heat, cook the turkey, breaking up the meat, for about 5 minutes, until it starts to brown.
2. Meanwhile, peel and chop the onions and carrots.
3. Add the onions and carrots and cook for 3 more minutes.
4. Rinse quinoa, and add it along with 2 cups of water, butter, and pilaf spices (see below) to the turkey mixture. Stir well.
5. Add the raisins, pine nuts, and spinach. You will need to add the spinach in batches while it cooks down.
6. Cover and simmer over low heat, stirring occasionally, for about 20 minutes. Add salt to taste

Pilaf spice mix (from CDKitchen)
1 tablespoon instant chicken bouillon
½ teaspoon curry powder
1/8 teaspoon garlic powder
1/8 teaspoon allspice
1/8 teaspoon black pepper
1/8 teaspoon onion powder
½ teaspoon dried parsley

*Adapted from the Dishing It Up Disney Style cookbook.

Thursday, November 8, 2012

Hospital Food

Bisi had to be admitted to Children’s Hospital in Boston to get her blood sugar down—but also so we could learn about type 1 diabetes and the glucose testing/carbohydrate counting/injection regimen that now needs to happen at least three times a day (with every meal and sometimes snacks).

Before this, most of what I knew about type 1 diabetes had come from a friend of Bisi’s who was over at our house for a playdate last year. She had a relative who had died of undiagnosed type 1 diabetes. (One of the dangers of diabetes is that if your blood sugar is too high for too long, acids build up in your blood and you can go into something called diabetic ketoacidosis, which can cause kidney failure and heart attacks, among other potentially fatal complications. Once you’ve been diagnosed, you are much less likely to go into DKA, though diabetics have to be especially careful when they get things like the stomach flu or pneumonia. Here's a more scientific and complete description than mine.) Somehow diabetes came up while I was serving them snack and I said something that in retrospect sounds to me both inane and ironic, like, well it’s important that everyone eat healthily to lessen the risk of getting diabetes. This little girl told me that getting type 1 diabetes has nothing to do with what you eat or how much you weigh—it just happens, it can happen suddenly, and we don’t really know why.

Now, a year later in the hospital, Mark and I heard a more complicated version of what Bisi’s friend had told us. Type 1 diabetes, unlike type 2, is an autoimmune disorder. For some people, there may be a genetic predisposition, and then some sort of environmental factor, or combination of factors, triggers the body to attack the pancreas, eventually shutting down its ability to produce insulin. While some people with type 2 diabetes can control the condition with diet and exercise, people with type 1 diabetes are dependent on insulin injections (but—and this may sound confusing—the type of food they eat and how much exercise they get affects how much outside insulin they need).

Our three days in the hospital were a crash course about the disease and the steps that we needed to take for Bisi before each meal. The torrent of information was overwhelming—it felt a bit like when you have your first child, and you’re learning so much in those early days that you can almost feel your brain stretching and expanding. Yet while that learning was joyful, this education at Children’s was upsetting but essential. Our minds were (and are still) raw from the new knowledge that our daughter has a chronic disease, yet we were asking our minds to work harder than they ever had to lock in this new information.

So here is an (extremely) distilled version of the routine they taught us we would now be going through before each meal:

1.     Test Bisi’s blood sugar. (Prick her finger with a little needle called a lancet, use a test strip to suck the drop of blood up through the test strip and into the meter, wait five seconds for the result.)
2.     Figure out how many carbohydrates she’s going to eat in her meal.
3.     Plug these two numbers into a mathematical formula involving Bisi’s target blood glucose level (right now it’s 150, which is 70 or so points higher than what someone’s without diabetes would be); her correction factor (for her, one unit of insulin would bring down her BG level by 250 points); and her carbohydrate ratio (these days, she needs one unit of insulin to eat 55 carbs).
4.     Draw up the dose of insulin based on your calculation. (Calculating this on the Children’s Hospital worksheet took us about five minutes; but Mark quickly found an iPhone app that calculates it for us—thank God for apps.)
5.     Inject the insulin and wait at least five minutes for it to take effect before Bisi starts eating.
6.     Make sure Bisi eats pretty much exactly the number of carbs she said she was going to when you calculated the dose, and that she eats it within 45 minutes or so of when you gave her the dose.

Anyone who has a child knows how difficult it is to get them to wait five minutes or longer when they’re really really hungry, or to eat exactly what they say they’re going to eat (except if that food is, say, ice cream with sprinkles).  So there’s a lot that goes on between the lines to make sure these six steps happen.

Luckily, so far (I’m knocking on wood as I type), Bisi has been fabulous about eating pretty much exactly what she says she’s going to. In fact, she’s been pretty great about the whole thing; maybe most six year olds would be? I’ve been surprised by how quickly she’s adapted to and how well she adheres to this whole routine. But I do think that three days in the hospital (the last time she was a patient was when she was born) have a way of making a child take things seriously.

At Children’s, the process I described above was made slightly easier by the fact that the menu they gave us had nutrition information printed on it, so it was easy to count up a meal for her of, say, 4 chicken fingers (25 grams of carbs), ½ cup of broccoli (3 grams), ½ cup of milk (7 grams), and a ½ cup of vanilla ice cream (16 grams). But, even with our nascent understanding of diabetes, there was a lot on that menu that we didn’t think we’d be serving to Bisi once she got home. Why would we give her the empty carbs of a hamburger bun—27 carbs, for which she’d need a half unit of insulin—or Teddy Grahams (27 too), or French fries (18 grams for a measly 3 ounces)? Or what about the sugar jolt from a regular-sized yogurt with 42 carbs? (In yogurt almost all the carbs come from added sugar.)

Also, there were the mysterious sugar-free items that started showing up by her bedside, even though we hadn’t requested them. Bottles of Crystal Lite lemonade and containers of Jello made with Nutrasweet. We didn’t serve Bisi much juice or jello before she was diagnosed; why would we start now? Her endocrinologist, who happened to stop by when her tray was piled with unasked-for sugar free treats, clearly felt the same way we did. I told him that we ate pretty healthily at home, and I didn’t imagine that Nutrasweet was going to become a big part of Bisi’s diet just because of this new diagnosis. (This is not to say that I don’t give her some sugar free gum now and then when other people are having treats that she no longer can—but sugar-free treats are a small, back up weapon in our arsenal rather than something we rely on often. Perhaps our feeling on this will change as our understanding of the disease—and how Bisi does with the disease—evolves.) He quietly slipped the Crystal Lite bottles and Jello containers into his lab coat pockets, and continued on with his rounds, probably with a stop by the nearest trash can.

There was a lot we didn’t (and still don’t) understand about diabetes. But we now knew that Bisi would be insulin-dependent for the rest of her life (barring some yet-to-be discovered medical miracle). We knew the basic steps of how to take care of her. And we also knew that we would address this disease by trying to feed Bisi (and the rest of us) the healthiest food we could.