Addendum on Vitamin D

I think in my post on vitamin D I may have made it sound as if Mark and I are sitting around flagellating ourselves about Bisi’s diagnosis. We’re not.  I do think it’s natural when a child gets sick to wonder if you could have done something—anything--to prevent it. But we quickly moved past that. We don’t have time to worry about it, and there’s no point anyway. A lot of what we’re doing now—trying to cook in a healthy, low carb, low sugar way, giving her vitamin D and other supplements to support her lingering pancreatic function, trying to get her to be as active as possible as a way to manage her blood sugar—we see as proactive ways to keep her as healthy as we can.

But because vitamin D appears to have some benefit for so many potential conditions, I wanted to pass along some more information—some of it came to me in comments on the vitamin D piece (a version of which was posted on The Atlantic’s Web site); and some just didn’t fit into my initial post.

The Vitamin D Council has links to studies about vitamin D’s potential benefits, and also information about how to calculate dosage. Essentially, they recommend that healthy children over a year old should get 1,000 IUs for every 25 pounds of body weight; adolescents and adults, they say, should get at least 5,000 IUs. This is SIGNIFICANTLY  higher than the U.S.’s recommended daily allowance. Of course, the sun is the strongest and best source of vitamin D. If you’re fair skinned and go outside in shorts and a t-shirt on a sunny summer day at noon, you can get 10,000 IUs of vitamin D in ten minutes, according to a good article on the topic in US News.  This is why some pediatricians are recommending that children spend 15 minutes outside before they get slathered with sunscreen. But, again, you could spend all day outside on a sunny October day in Boston and get no vitamin D, because, as explained in that same article, the “sun never gets high enough in the sky for its ultraviolet B rays to penetrate the atmosphere.”

If you are giving your child (or yourself) a lot of vitamin D, you should get them tested to make sure you’re not giving them too much. There are two types of tests; but the most accurate marker of vitamin D levels in the blood is the 25-hydroxyvitamin D test.

Finally, if you want to know more and veer towards alternative medicine and natural health information, you might be interested in this trove of information on vitamin D. 

Bisi’s endocrinologist mentioned that we should give her D₃ (cholecalciferol), rather than D_2, since at high doses the latter is less potent. You can get this anywhere; we’ve found a couple of kinds we like at Whole Foods: Kal D-3 2000 IU chewables (we like this one, because she gets her whole requirement with one sugarless, carb-less little cinnamon-flavored pill) and Jarrow Formulas Yum-Yum D-3 gummies (400 IUs per chew; Bisi prefers this one, because it tastes like candy—we prefer not to give her the empty carbs, but don’t always win this battle). With this--as with all things in parenting—we have to choose our battles; and I have a feeling that in managing as complicated a disease as T1D we are going to find that compromising with Bisi where we can is going to be an important and necessary tool.

Connecting the Dots between Diabetes and Vitamin D

When we were in the hospital, Bisi received a box of diabetes information from the Lilly pharmaceutical company (the same company that produced the Disney diabetes cookbook and that makes the insulin Bisi takes with her meals). The text on the box never failed to crack Mark and me up, in a black humor kind of way. It became especially useful in those inevitable moments where one of us would say something like: “if only we had…” “what if we had…?” The other would respond by  (half) jokingly quoting back the text on the Lilly box: “Pause. Take a deep breath. And remember: You couldn’t have prevented what’s happening with your child, so try not to beat yourself up.”

The truth is, there is no known way to prevent type 1 diabetes, an autoimmune disease where the immune system attacks the pancreas, eventually shutting down its ability to produce insulin, which regulates our blood sugar when we eat. But there are some emerging theories about what makes type 1 diabetes more likely. The most intriguing of these—the one that causes Mark and me to take the most deep breaths—is the vitamin D theory, linking low vitamin D levels to type 1 diabetes.

Several studies have shown this link, including one published in September in the journal Diabetologia. In that study, researchers from the Naval Health Research Center in San Diego and from universities in California and Florida compared the vitamin D levels of military service members diagnosed with T1D with the vitamin D levels of a control group of service members without diabetes. They found that those service members with the lowest concentration of vitamin D in their blood were 3.5 times more likely to develop diabetes than their peers with the highest vitamin D levels.  In 2008, the Archives of Disease in Childhood published a meta-analysis of observational data from four studies of vitamin D intake by young children in various European countries. Their conclusion:  “children being supplemented had a 29% reduction in risk of developing type 1 diabetes compared with their peers who were not being supplemented.”

Mark and I don’t know that Bisi was vitamin D deficient—blood tests for vitamin D levels in children are not standard, even though the American Academy of Pediatrics estimates that more than 75% of infants aren’t given the recommended amount of vitamin D, and even though low levels of vitamin D have been implicated in a wide range of conditions, including cardiovascular disease, osteoporosis, multiple sclerosis, and some cancers. But we think it’s pretty likely her level was low. We weren’t all that great about giving her the vitamin D drops that her pediatrician recommended for breastfed infants (formula is fortified with vitamin D). In New England, the angle of the sun is such that the summer months are the only ones where you can get sufficient vitamin D from the sun’s rays. And I had been obsessively slathering Bisi and her brother, Jamie, with sunscreen ever since my dad was diagnosed with melanoma, a disease that killed him when the kids were 3 and 5. (Mark, and it seems in retrospect that he was right, always argued for the kids to get their 15 minutes in the sun with no sunscreen, so they could get their vitamin D.) In any case, many of the health benefits of vitamin D are thought to begin at much higher levels than the current RDA of 400 IUs for infants and children (the recommendation was upped from 200 in 2008).

In the hospital, Bisi’s endocrinologist told us that if low vitamin D levels contributed to Bisi’s diagnosis, it was one of many causes—a kind of layering of effects. Bisi had a genetic susceptibility—we know now that T1D is linked to other autoimmune diseases that run in our families. A virus like coxsackie, which many children get, may have increased her susceptibility. (This is another “take a deep breath” topic for us. I can’t help thinking back to the time when ten-month-old Bisi got a raging case of coxsackie, which is transmitted through feces, after spending a vacation in the Caribbean crawling around on an outdoor veranda where wild rabbits hopped around and inevitably pooped. We tried to keep her hands clean, but…) There may also be another, as yet undiscovered, environmental trigger. T1D increased 23% in the U.S. from 2001-2009, and worldwide it’s increasing at a rate of about 3% a year. No one knows exactly why.  Still, at least in Bisi’s doctor’s view, vitamin D is an important part of the puzzle. “Do you have another child?” he asked us in the hospital. We told him about Jamie, who is 8. “Give him vitamin D supplements.”

Now, both of our children are taking 2,000 IUs of vitamin D a day—Jamie, because as the sibling of someone with T1D, he is at higher risk. Bisi, because there is some evidence that taking vitamin D can help extend the life of the few insulin-producing cells she still has. (They're also getting tested to make sure they're not taking too much.)

So, pause. Take a deep breath. And remember:  You should make sure your kids are getting enough vitamin D.

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.

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.

The Last Lemonade Stand

It all started when Bisi drank all our profits at a Sunday afternoon lemonade stand on Block Island.

Well, it had really started a while before that (weeks, months, or even years—we're not sure), but the lemonade stand is when it became inescapably obvious that something was wrong. Bisi must have chugged four or five cups of lemonade, and then had to go pee almost as many times behind our car parked along the side of the road. “What’s happening to me??” she asked us—not in an upset way, but genuinely curious about why her body was acting so strangely. The next morning I took her to the island clinic, and she received the diagnosis that (after some night-time internet research) we were both dreading and expecting—type 1 diabetes.

For five days, she had been peeing and drinking way more than normal. At first we thought it was because she was swimming in a chlorinated pool two or three times a day at summer camp. “Have you been drinking the pool water, Bisi?” “Yes, but I’ll stop.” I’d noticed that she’d lost some weight, but again I attributed it to summer camp and all the running around she was doing there.

A few months before that, her need for sugar seemed to become more urgent. She started complaining that blueberries and strawberries, which she’d always loved, were too sour. Once she was diagnosed and on insulin, her taste for sugar went back to normal.

For at least a couple of years before that, her mood seemed heavily dependent on food. We’d always keep some dry cereal by our bed so that when she came in in the morning, growling with crankiness, we could hand her something she could eat to improve her mood. I’d always mention it to her pediatrician at her annual visits, asking why Bisi’s mood seemed so much more affected by food than her older brother’s did. The doctor always said it was just her personality—which may be true, and made some sense to me, since her father, Mark, used to be the same way.

I used to keep a granola bar in the car for when he would get hungry and cranky, and we both remember clearly an off season trip to Prince Edward’s Island, where we drove half an hour to a town expecting to find a restaurant open for a late lunch but instead found everything closed. Mark was so desperate for food that he had me pull over so he could gobble down some pickles we had in the trunk; a little bit later, we pulled over again so he could pick and eat an apple from a roadside tree.

Since Bisi’s diagnosis, all of the doctors and nurses I’ve talked to—except for one—have said there’s no connection between her food-related mood swings and the onset of diabetes. And yet in the months before her diagnosis these mood swings around meal times had seemed to grow worse. Mark and I are still recovering from Bisi’s sixth birthday party, a couple months before her diagnosis, where we forgot to give her a snack before the party started, and we and the six-year-old guests watched Bisi transform before our eyes into her own version of Natalie Portman’s Black Swan, her face paint smeared all over her face by tears and tantruming. Yet since her diagnosis, her mood seems much more even. My (totally unscientific and not backed up by doctors) hunch is that Bisi’s blood sugar was spiking and dropping long before her diagnosis, though this goes against the conventional wisdom, that type 1 diabetes tends to come on very suddenly.

****

At our Monday morning visit to the Block Island clinic, the diagnosis process was simple—they tested her urine and found sugar in it; and they tested her blood, and found that her glucose level was near 500—about five times what a normal reading should be. In a daze (I was in a daze; Bisi was focused on the fact that her vacation was being interrupted), she and I took the next ferry back to the mainland, leaving her brother Jamie with my mother. Mark picked us up, and we headed to Children’s Hospital in Boston. More on that later.

It’s now been about two months since her diagnosis. We have learned a ton during that time, and parts of our lives are starkly different from what they were. Many of the changes revolve around food—what Bisi eats, how we cook, how we all think about food now. My plan is for this to be a diary of Bisi’s first year with diabetes, but focused on the food aspect of this new reality of ours. It’s not a journey that any of us would have chosen, but now that we’re on it, we’re trying to get our heads around it as best we can. I hope that this diary will help that process along.