The Loneliness of T1D

Yesterday, Mark, Jamie, and I each got separate letters from the Joslin Diabetes Center saying that the results of our screening tests for type 1 diabetes were negative. This does not mean that we are totally in the clear, but still, it's good news. In the words of the letter: "This means that no diabetes-related autoantibodies are present in your blood at this time. This is not a guarantee that you will never develop diabetes. It does mean that you are currently at lower risk than if you tested positive." If one of us had tested positive, they would have done more testing, including a glucose test like the one they give to pregnant women, where you down a very sugary drink, and then are tested to see how you process it. If, after that second round of testing, we were still deemed to be at high risk for developing T1D, we would have been eligible for a clinical trial, testing whether ingesting small amounts of insulin helps to stave off the disease. Mark and I are now permanently ineligible for the study; Jamie could still be tested each year to see if his autoantibody status has changed--ie, to see if his immune system has started attacking the beta cells in his pancreas.

Of course, Mark and I agonized over whether Jamie should do the test. Would it scare him? Would he start worrying that he, too, will get diabetes? How would Mark and I handle the news if he tested positive? What would we tell him? In the end, we decided that if he is prone to getting diabetes, we didn't want to be blindsided by it, as we were by Bisi's diagnosis. And if there's a chance that this study would delay the potential onset of T1D, we wanted to know that we'd done everything we could. In explaining the clinical trial, we told him that this could help push T1D research forward, and therefore might help his sister.

The day of the test, Bisi was pretty thrilled to see the three of us get blood tests while she could just sit by and watch. (It reminded me of when Jamie and Bisi got their flu shots this year; he was eligible for the flu mist and was begging for it, since he didn't want the injection. Bisi was not technically supposed to get the live vaccine that's in the mist, since her immune system is a bit compromised by the diabetes, but the nurse told me it was probably fine, and it was my choice. What would you have done?? I decided that both would get the shots, and Jamie immediately started to sob. Bisi got hers, as cool as a cucumber, and then watched with a cheshire cat grin while Jamie cried and got his. Afterwards, he admitted that it wasn't so bad.)

For all of our anxiety about whether to do the test and how it would affect Jamie, he seemingly hasn't thought one bit about it in the six weeks since. He's never asked what the result was, or mentioned it in any way again. Mark and I are thrilled that, at least for now, we can banish this one worry from our thoughts. But for Bisi, I feel that this "all clear" news is more mixed. Having T1D sets Bisi apart--sets her apart from her friends and from her family. In some ways I think that the extra attention she gets through the diagnosis makes her feel special--friends walk her down to the nurse, she gets a special pink card to save her place at the lunch table since she's often late because of the blood sugar testing and insulin dose. But the diagnosis makes her feel lonely too. We've tried to do what we can to remedy this: Bisi and Jamie have a favorite babysitter who has T1D; we've set up playdates with other kids with T1D; we all usually eat the same meals, and, as I've mentioned, Mark has gone gluten free in solidarity with Bisi. (Bisi recently said she wanted the whole family to go gluten free, but I see no reason to force this on Jamie; and I'm not ready to give up all the delicious things that have gluten--though I do try to avoid them when Bisi's around. The most difficult challenge so far has been not ordering the amazing homemade biscuits at our favorite BBQ place.)

None of this makes up for the fact that Mark, Jamie, and I have no idea what it feels like to have this disease--the sharp hunger when she's low, the listless tiredness when she's high, and the emotions caused by the swings in between the two extremes. Most of the time when your child is going through something, you can tie it into your own childhood experiences. You can help them work through it because you understand just how they feel. Bisi feels this absence keenly, even though she's only expressed it a couple of times. Once she asked whether our new dog, Cinnamon, might get T1D. Another time, she was talking with our friend Rachel, who has asthma, as does her son, Owen. Bisi asked all kinds of questions about asthma and then said about Owen: "He's lucky. I think it's nice that someone else in his family has what he has." So for now, there won't be any discussion in our house of the results of those blood tests. Why would we want to rub it in?

Honeymoon!

When Mark pushed me to have Bisi go gluten free, his goal was to get her into a “honeymoon” period, where the pancreas starts working again—though not perfectly—after diagnosis. The theory, in layman’s terms, is that the hard-working pancreas has given up the ghost, but then revives a bit after getting the rest that outside insulin injections provide. Not all people enter a honeymoon period, but the majority do; in one study  of 103 children under 12 with T1D, 71 had a honeymoon. In the hospital, Bisi’s doctors told us that a honeymoon period could last for a couple weeks, or months, or up to a year. Very rarely, they emphasized—strongly—does it last longer than that, and the diabetes honeymoon, like all honeymoons, inevitably ends. 

Bisi started off at 4 units of Lantus a day—that’s one shot of slow-acting insulin that lasts about 24 hours in the background. She also receives Humalog, or fast-acting insulin, with her meals. In the hospital, to be conservative, they started her off at one unit of Humalog for every seventy carbs she ate. Over time, this ratio was adjusted downward, to a low point of 40 or 45 carbs per unit of insulin. Meanwhile, after some night-time lows, they adjusted her Lantus downward from 4 to 3.5 to 3 units a day.

We stayed at these numbers for maybe 6 weeks when suddenly, she started having unexplained lows. In particular, I remember one morning when we went to Gloucester for a hike. Bisi had had no Humalog with her breakfast, and we’d given her a yogurt snack, which is normally enough to keep her blood sugar adequately high, even if she’s active. At lunch we tested her, and she was 55. Fifty-five!! She’d never gone so low before, and for a diabetic, anything below 70 is considered worrisome. (Her range is supposed to stay between 80-180.) The honeymoon had begun.

The thing is, it turns out that the honeymoon is actually pretty stressful. As Bisi’s diabetes nurse educator told me, “A honeymoon is a terrible name for it.” For the next while, we felt like we were constantly chasing Bisi’s lows—she’d have a series of lows, and we would reduce her dose. She’d have more lows, and we’d reduce some more. Slowly, by half units, her Lantus dose went from 3 down to .5; then it went down to a “small” half unit—this is such a tiny amount that it’s not even a real measurement on Bisi’s syringes.  Meanwhile, her carb ratio went up, to a high of 60 during the day and 45 for dinner (many children need more insulin to cover their carbs at night). There have been a couple of weekends—times when we’ve been very active, when Bisi hasn’t eaten many carbs, and when she perhaps has had a low-grade illness pushing her blood sugar down—where she hasn’t needed insulin at all. On those weekends, what a huge relief it’s been to not worry about Bisi going low when she’s skiing or playing for hours at a water park—because she had no insulin in her system, there was no danger of her going low. It’s been a relief for Bisi, too. Not long after she was diagnosed, I asked her whether having diabetes was better or worse than she’d thought it would be when we first learned about her regimen. “It’s worse," she told me. "I didn’t know I’d be getting so many shots.”

At her peak, right after diagnosis, Bisi was getting six insulin injections a day (plus all the blood tests). Now, she still gets the blood tests, but she usually gets a maximum of three shots a day.

Once Bisi started honeymooning, we looked into other ways aside from the gluten-free diet of pampering her resurgent (though still very weak) pancreas. Her endocrinologist suggested we give her vitamin D, since there’s evidence that high vitamin D levels can extend the honeymoon. A relative who’s also an endocrinologist suggested that she take omega 3s. An herbalist suggested that she take fenugreek, burdock, and nettles to strengthen her pancreatic function. They won’t cure type 1 diabetes, he told me, but he believes that herbs like these can extend the honeymoon. Preserving the honeymoon is also a reason why we’re keeping Bisi relatively low carb—we don’t want to overtax her pancreas. 

Are we beginning to sound like kooks? Sometimes I wonder. But from other parents I’ve talked to, the highs and lows of diabetes are much more difficult to manage once the honeymoon ends. At that point, from my understanding, when the pancreas stops working for good and insulin needs are much higher, you are subject to higher highs, lower lows, and more dangerous swings between them. Even though I’ve complained here about having to get up in the middle of the night to test Bisi, those parents of children with diabetes whose honeymoon is over have to get up far more than we do—their kids are low, then high, then low again. If that is our future with Bisi, who can blame us for trying to delay it for as long as possible? (Sometimes the testing process at night goes perfectly, Bisi doesn’t wake up, and her blood sugar is at a comfortable 150. Other times, we have to poke around a while to get a big enough drop of blood. On one such night, Bisi roused slightly and said something that sounded like “Fooooouk.” “What did you say??” I asked her. “Foooouk.” I’m still not sure what she was saying, but if she was dropping the f-bomb, who can blame her?)

So we live in dread of what we’ve been told is the inevitable end of her honeymoon. Meanwhile, Bisi’s pancreas is sputtering along—I picture it as like the Vespa I once rode in Sicily—sometimes it’s speeding along faster than you’d expect, causing lows, other times it decides to conk out, causing highs. In the five months since she’s been honeymooning, we’ve thought the honeymoon was over several times—usually after holidays, when it is very difficult to limit her sugar intake because desserts are plentiful, and everyone around her is eating a lot of them. But, like the little engine that could, to use another metaphor, each time she starts producing a little bit of insulin again and her blood sugar levels go down.

Yet, according to at least one prominent expert in diabetes, Dr. Richard Bernstein, the end of the honeymoon period is not  inevitable—though it’s very, very likely. Bernstein, a type 1 diabetic, is the inventor of the basal/bolus method of injections that Bisi and many other type 1 diabetics now follow, where you have one long-lasting “basal” shot each day (Lantus), and then other, short-acting “boluses” with your meals (Humalog). Bernstein was diagnosed with T1D at age 12, and became a doctor in his late forties so he could better understand the disease that he felt was killing him through its complications. He sharply improved his health by switching to a low-carb diet to normalize his blood sugars. In his book Dr. Bernstein’s Diabetes Solution, he writes,  “Based upon my experience with the fair number of type 1 diabetics I’ve treated from diagnosis, I’m convinced that the honeymoon period can be prolonged indefinitely. The trick is to assist the pancreas and keep it as quiescent as possible. With the meticulous use of small doses of injected insulin and with the essential use of a very low carbohydrate diet, the remaining capacity of the pancreas, I believe, can be preserved.” The problem, Bernstein explains, is that by the time someone has been diagnosed with T1D, at least 80% of their beta cells, the ones that produce insulin, have been destroyed. So all Bisi has to work with for the rest of her life are the less than 20% that remain. What’s more, high blood sugar levels are thought to be toxic to these beta cells, so unless you are able to keep very tight control of your blood sugar levels, these cells will burn out one by one.

Bisi is maintaining good blood sugar control; her last A1C level, a measure of how much sugar has been in your bloodstream over the past three months, was 6.3, whereas the target for someone her age with diabetes is anything below 8. (A child without diabetes should have an A1C between 4 and 6 percent.) But she is not maintaining the sort of tight control Dr. Bernstein is talking about—we just don’t feel like that would be sustainable for a young child. Her growing brain needs carbs, and she needs to have the freedom to eat more than just vegetables and protein. If she were old enough to choose to take such an approach, that would be one thing. But it doesn’t feel right to impose it on her. So for now, we’ll see if we can walk the fine line of protecting her remaining beta cells, while giving her enough of what she likes to eat. It’s hard not to have a tiny bit of hope that the honeymoon will continue and continue, but we also need to prepare ourselves that it won’t. Like a real honeymoon, we’ll try to enjoy it while it lasts.

Honeymoon Sundaes

Okay, neither of these really qualifies as a sundae. But both are relatively low carb, yet delicious enough to feel like a special dessert.

Sliced strawberries, topped with whipped cream (heavy cream that you whip up yourself, not the stuff in a can), flavored with a tiny bit of honey.

Frozen blueberries with ½ and 1/2, with a little bit of cinnamon sprinkled on top.

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.