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 Trouble with Sugar

A few mornings ago, at Jamie’s third grade breakfast share, about half of the items had chocolate, or some other ingredient that in another context could be classified as dessert. Chocolate chip waffles, chocolate chip shortbread, mini chocolate chip raspberry muffins (delicious!), chocolate chip bread, and donuts with sugary pink icing and candy dots sprinkled on top. We brought the low-carb, low glycemic, gluten free blueberry muffins that I mentioned in a previous post. Only three out of the dozen I brought were left, but I know for a fact that Bisi ate three of the muffins and Mark ate two, so they were not a popular item outside our family. Now, I love a good chocolate croissant or chocolate chip scone as much as the next person, but it’s kind of shocking once you start really thinking about how much sugar most of us consume, how integral it is to our daily lives, and how “special occasions”—like a breakfast share, or a birthday party, or valentine’s day, or family dinner at a friend’s house, or…, or…---almost always involve an extra helping or two. I’m not saying anything new here, but sugar is everywhere—many kids eat it at breakfast, lunch, and dinner, and at snacks in between. It’s in some of our bottled water and it’s in our bread. This last is something I never thought about until an Australian friend mentioned to me that he and his family had started making their own bread while in the U.S., since all the bread here tasted too sweet. The food writer Marion Nestle wrote that anything with more than about 15 carbs of sugar should be considered dessert; and by that standard, many kids eat dessert more than five times a day. (This was passed along to me by my friend Gina, who has been researching and thinking  about this issue for years, but, as she says, railing against how much sugar we all eat is a lonely battle that makes you seem like a kill-joy, not least to your kids.)

Sugar consumption is something I was vaguely worried about before Bisi was diagnosed, but it wasn’t something I thought about a lot—unless Gina and I were talking about it. As I’ve written before, type 1 diabetes, as opposed to type 2, is an auto-immune disorder; it’s not caused by eating too much sugar. But there’s no doubt that refined sugar spikes Bisi’s blood glucose high and fast, and that she needs extra insulin to cover it. (Lower glycemic sweeteners such as agave and coconut nectar have a gentler effect on her.) And I also wonder whether someone who’s pancreatically challenged like Bisi could stave off the onset of diabetes by drastically cutting down on their sugar intake.

So it’s clear why I’m now worried about sugar. But according to an article by Gary Taubes that ran in The New York Times Magazine a couple of years ago, all of you should be too.  I’m summarizing a long article into a couple of sentences here—you should read the article if you haven’t—but he posits that refined sugar and high fructose corn syrup, not fat, are responsible for increases over the past century in obesity, diabetes, some cancers, and heart disease. And an article in this month’s Sky magazine talks about the links between consuming sugar and disease, and cites a 2009 study by the American Heart Association that men should eat a total of nine teaspoons of sugar per day and women only five. At four carbs per teaspoon, that's the amount in a half-cup to a cup of ice cream.

The mechanism is complicated, but essentially it involves overtaxing the liver by asking it to process more and more fructose, which in turn means that the body becomes resistant to insulin and must produce more and more to combat the sugar. So it’s a vicious cycle. Scarily, for the parent of a diabetic, Taubes argues that it’s the excess insulin that spurs tumor growth and heart disease. It’s easy not to think about how much insulin your body needs to process the sugar you’re eating when everything works seamlessly and internally. But if I have to give Bisi an extra unit of insulin so she can eat a pink-frosted donut with candy on top at her brother’s breakfast share…well, maybe I’ll just give her the low-carb not very sweet muffin I made instead. (Of course, since she’s gluten-free, she can’t have the donut anyway—now you see one of the reasons why the gluten-free diet comes in handy.) Eating the healthy muffin rather than the tempting donut requires real willpower on Bisi’s part. I asked her recently how she thinks about sugar and she said, “I like to eat sweets but I know it’s bad for me.” “So what do you think the solution is?” “To cut down on sweets and to not always eat them even if your friends are.” And here’s one of the hard things: because of our society’s sugar obsession, when Bisi cuts down on it for her health, that becomes another thing that sets her apart from her peers.

I’ve read that once you start to eat less sugar, your taste for it shrinks too. I feel like I’ve seen that in Bisi, and in myself. That Ben and Jerry’s Mint Oreo that used to be my favorite flavor now tastes too sweet, and I prefer Breyer’s mint chocolate chip (23 grams of sugar versus 17 grams). But I don’t want to pretend that we’re healthier or more virtuous than we are. We’ve cut out the occasional Dunkin Donuts snack; we’ve cut out the weekly trip to JP Licks for ice cream. We’ve cut out the big glob of maple syrup on the oatmeal in the morning. But our kids still eat sugar—probably much more than American kids of a century ago, or than present day kids in other countries. According to one estimate, Americans in 1822 consumed an average of 6.7 pounds of sugar a year. Today, it’s over a hundred pounds. Again, it’s a balancing act. Sugar is such an integral part of U.S. society today that keeping Bisi from eating it would not only make her miserable, but make her feel like something of an outcast. Maybe at some point society will move in our direction; or, when Bisi’s older, maybe she’ll make a choice on her own to strictly limit her sugar intake. But for now, we’ll try to eat sugar wisely, and when we have it, we’ll make sure that it tastes good enough that the choice is worth it.

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When Bisi was in the hospital, one of the nurse educators we met with suggested that we spend some time in the supermarket aisle, looking at labels to see which treats are a good fit for someone who should be limiting her carbs. Here are a few of the ones we’ve found and like. None of these listings are sponsored—I wish they were. Buying healthy food is expensive!

Yogurt: I always used to give the kids Brown Cow yogurt, but the brand I tend to buy now is Oikos Organic. Their strawberry and blueberry yogurts, at 16 carbs, are less than half what some other yogurts are. And the smaller Oikos vanillas, at 9 carbs, are even better.

I was thrilled one day to find Siggi’s Icelandic yogurt—11 carbs each, and sweetened with agave, which has a much lower glycemic level than sugar. But, unfortunately Bisi doesn’t really like them—they’re too sour. Maybe if I can get her sugar needs down further I’ll try again. Stay tuned for Mark’s efforts to make our own yogurt—the machinery has arrived, but the experiments have yet to begin.

Ice cream, yes, ice cream. I’ve found that ice creams, too, vary considerably in terms of how much sugar/how many carbs they have. If Bisi’s going to a birthday party, Hoodsie’s are a good thing to send with her, since she can’t have the cake. They seem special, since they come in those cute little cartons. And the portions of them are relatively small—about half a cup. I’ve found that Breyer’s ice cream tends to be lower carb than many other brands. Note that some sorbets have more than double the amount of sugar that many ice creams do (because they’re all fruit and sugar, rather than dairy and sugar).

Popsicles:  We like the Smooz fruit pops, at 11 carbs. And Lifeway’s 13-carb frozen kefir pops, with probiotics.

Kind Bars:  The carb counts of these vary widely, but some of them are as low as 14 carbs, and they’re a great snack since they’re full of nuts (protein), they aren’t very sweet (usually about 5 grams of sugar), and they’re high in fiber--fiber counteracts carbs. Unfortunately, whether Bisi likes these is mood-dependent.

Cereal:  Purely Elizabeth: a gluten free granola sweetened with coconut sugar with various ingredients that are supposed to be great for you, like chia seeds, amaranth, and quinoa.

I recently discovered Seitenbacher gluten-free muesli #6. I like it because Bisi likes it and because it’s low carb, high in protein, and high in fiber. 

Also, at a farmer’s market in Seaside, Florida, we tried and bought an incredibly delicious cereal/snack called Veronica’s Health Crunch, including pecans, pumpkin seeds, coconut flakes, a little sweetening, and a little salt. It’s gluten free, very low carbs, high protein, high fiber—ie, a perfect snack for Bisi. Now we just have to get her to like it.

Gluten-free baking products:  As I mentioned in a previous post, I love the products made by Bob’s Red Mill. But, as my friend Emily Moore, author of the diabetes blog Icarus and Daedalus, commented on that same post, gluten-free products often have as many if not more carbs than regular products. Fortunately, Bob’s sells several nut-meals that are very low carb, and that can be substituted for most other flours (though the consistency is moister). The one we’ve used the most so far is almond flour, though hazelnut is also good.

Breads:  Some of the gluten-free breads (I won’t name names) really shouldn’t be called bread. Instead, think of something that has the consistency of flavorless, unsweetened pound cake. But so far I’ve found two brands that Bisi really likes: Udi’s and Glutino. You have to check the labels of each kind, some are higher carb than others, but the ones we buy have 10 or 11 carbs per slice. That’s half the amount of the regular bread I buy for Jamie. Often, if I’m making a grilled cheese for myself, I’ll voluntarily choose the gluten free.

Suggestions Needed: Do you have any suggestions for good, gluten-free, relatively low carb snacks and/or desserts? Either sweet or not? If so, please pass them along. Bisi is constantly deciding that she doesn’t like a snack she once liked, so we are in constant need of new ideas.

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.