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365 Days of T1D

It's now been a year since Bisi was diagnosed. In the weeks leading up to the anniversary, I found myself thinking over and over again about that time: the growing fear that something was wrong mixed with the lingering hope that everything was fine. The shock of her diagnosis, and the subsequent days in the hospital, where we were introduced to the mind-boggling, terrifying balancing act that taking care of Bisi would now require. I started reliving little things, too, like the feeling of dread I used to have during the five seconds between putting her blood on the test strip and finding out her blood glucose number on the screen of the meter. It reminded me of the year anniversary of my father's death, when memories of the weeks before he died kept popping unbidden into my head.

And I wasn't the only one who was thinking about the anniversary. Bisi kept on talking about it too. On the morning of the anniversary, she told me. "I've now had diabetes for more than a year." "How do you feel about that?" I asked her. "Good."

I wasn't sure what to make of her comment, but I didn't want to press it, since she didn't seem to have more to say on the subject. Did she mean that she was happy it had been a year? That it had been a good year? Or did she just not really want to talk about it with me?

Just as they told us in the hospital, looking back to the beginning, we can't believe how much we've learned, and how much of it now feels routine and integrated into our lives. Yet, T1D is an incredibly frustrating disease--one that is impossible to master. Bisi's numbers are always shifting--depending on how active she is, whether she's fighting off a bug, if she's growing, and what she eats. If she eats out and has something like pizza or french fries, paired with dessert at the end, her blood sugar goes crazy, and Mark or I are sure to be up testing her at 2, and maybe again at five. But even two identical, relatively low-carb meals at home can result in quite different blood sugar numbers. No matter how much we try to get our heads around it, diabetes always seems to have the upper hand. I was viscerally reminded of this on the day of Bisi's diagnosis anniversary. I tested her an hour or two after breakfast and she was 231 (too high). But I decided not to give her insulin because she wasn't hungry, and a half unit of insulin without carbs would probably have sent her too low. So we went out for an hour and a half of not very active crabbing at a local dock. We came back for lunch, and Bisi started freaking out over something insignificant. It didn't occur to me that she'd be low, since she hadn't had short-acting insulin since breakfast and also hadn't been very active. But when I tested her, she was 50--way too low, and most likely the cause of her freakout. Mistakes like these are humbling; and they're scary.

But there have been good things too. Though there of course have been bumps in the road, I am so proud of and amazed by how Bisi has taken this on. She rarely complains about getting shots, about going to the nurse all the time, about how her diet is circumscribed ("sorry, Bisi, you can't have that treat everyone else is having; you can't have seconds on dessert; you can't have that treat you really want now; but maybe later. You can no longer have the maple syrup you love on your pancakes; instead you can have this berry compote I made, which I know is a poor substitute; I know you'd really love a yogurt or piece of fruit for snack, but right now all you can have are cheese and nuts." And on and on and on). She takes real responsibility for what she eats--always checking with one of us first before eating something with carbs--and in the process she's gained a pretty deep knowledge about different foods and how they affect her. She's learned how to do everything herself--the tests, the insulin calculations, and the injections. This gives her the freedom to go over for a meal at a friend's house without us. It's pretty impressive to see a seven-year-old test her blood and then do her own insulin shot.

Bisi's not one of those kids who voluntarily loves to go on hikes or walks, but she seems much more energetic and robust now than she did a year ago. This summer she's biked six miles around a lake (albeit with a little help from our dog on the hills); she's learned how to body surf and surf in the ocean; she asks to run races around the house, and spends her time outside perfecting her cartwheels and backbends. And she never asks to be carried anymore; though last year she asked all the time. How much of this is that Bisi is a year older and how much is that she's stronger because her blood sugar is more under control than it was? Who knows, but my gut feeling is that she has become stronger, healthier, and happier since she started being treated for diabetes. Maybe this is partly why she said she felt "good" about the year anniversary?

About a year ago, I started this blog by talking about the lemonade stand on Block Island, the day before Bisi's diagnosis, where it became clear to us that something was really, really wrong. When Bisi wasn't chugging lemonade or peeing behind our car, she was sitting listlessly in my lap, her head flopped against my arm.

This summer on Block Island, we did another lemonade stand--this time serving fresh squeezed lemonade sweetened by stevia rather than sugar, so Bisi could drink it without an insulin shot. (We also served our regular Minutemaid lemonade--but the stevia version won all taste tests and sold out first.) This time, when there weren't customers, she spent her time doing races with Jamie and our dog, and doing cartwheels by the side of the road. And I couldn't help thinking what a difference a year makes, in both bad ways and good.

The Up-side of Cotton Candy

The other night, the four of us went to Fenway Park to enjoy a Red Sox game. For anyone who is trying to limit their children's consumption of junk food and/or sugar, a game at Fenway is kind of a nightmare. Men in yellow shirts come by about every 2 minutes selling soda, cracker jacks, lemonade, italian ice, frozen lemonade, "sports bahs" (my personal favorite), or cotton candy. Plus, there's soft serve ice cream at the concession stands inside. Each time one of the vendors walks by with the goods, it becomes harder to resist the kids' pleas. Finally, we gave in, and we bought Bisi a bag of cotton candy. Before you say, "WHAT? I can't believe you let your diabetic daughter have COTTON CANDY. That's the worst!!," let me explain. On the cotton candy man's first pass, we pretended we didn't hear Bisi's request. On the second, out of curiosity, I asked the vendor to show me the "nutrition" information (though it seems beyond ridiculous to use that word when talking about a food that consists only of sugar and food coloring). He showed us the label, and it said that 1/2 a bag of cotton candy, one serving, is just 15 carbs. That seemed unbelievably low to me, so I looked up cotton candy on an app we have where you can find the nutrition information of basically any food (My Net Diary), and it said essentially the same thing. By comparison, I struggle to find a yogurt that is below 20 carbs. A cup of chocolate soft serve ice cream is 56 carbs; a cup of Minute Maid lemonade is 28; a Sports Bar is 26 (My Net Diary is so all-inclusive that I was able to find "Boston Red Sox Sports Bar" on it). So, the next time the cotton candy man came around, we took a deep breath and bought a bag. Then we tested Bisi's blood sugar, and gave her the 1/2 unit of Humalog that the calculations called for. And we hoped her blood sugar wouldn't spike so high that we'd have to correct her later, and then get up three hours after that to test her.

In fact, we did have to get up at 3 am to test her--because she was too low when we tested her before she went to bed. She came in at 92, so needed a little boost of milk to bring her blood sugar up above 100, where it's supposed to be at night. I guess we should have let her eat a little more cotton candy.

Our experience that night highlighted something that every person who's been dealing with diabetes for a long time knows, but that we are just figuring out. Straight sugar is actually relatively simple to deal with, because Bisi's reaction to it is so predictable. Sugar is fast-acting, and so is insulin, so if she's eating something with just sugar, her blood glucose level tends to be pretty easy to control--as long as we calculate correctly. Where things get more complicated is when you add fat into the mix. We've been enjoying going to the new Shake Shack down the road from us, where the burgers and custard are unbelievably delicious. But the three times Bisi has been there and had a juicy cheeseburger along with a small custard, her blood sugar has been above 250 at night, meaning we need to give her a shot of insulin at 11 or so, and then check her again three hours later. By now I'm familiar with the pattern, so the last time we went, I gave her more insulin than the calculations called for--but still she was too high that night. The problem is that the insulin takes care of the sugar in the custard, but the fats in the burger and in the custard cause a second spike in her blood sugar, and by the time that spike hits, her insulin has waned. Bisi is thinking of going on an insulin pump, and one of the advantages of that technology is that you can tell it to give the insulin in waves--one wave for the sugar; a later wave for the fat. Still, I'm sure it's harder than it sounds to get it right. (Jessica Apple of A Sweet Life wrote about how difficult it is for diabetics to handle the combination of sugar and fat in a dispatch from a diabetes fundraiser where people were treated to a donut buffet, with add-your-own sprinkles and chocolate syrup--probably the worst combination for a group of people with diabetes. Here's her account.) For now we're living with the irony that something that I've always viewed as the junkiest of the junky--cotton candy--is actually, in terms of managing Bisi's diabetes, not so bad. So a year from now, when we're next sitting in the stands at Fenway and Bisi asks for her favorite treat, I won't hesitate to let her get it.

Common Ground

Last week, Mark and I took Jamie and Bisi to our college reunion. We all had a great time, though it was HOT, and the combination of un-airconditioned dorms, poorly made beds (come on, Amherst College students--don't you know how to do hospital corners??) and plastic mattresses was not a good one. Were the beds really that uncomfortable when we were in college?

But I digress. One of my close college friends has a son with severe allergies to dairy, wheat, eggs, and sesame, and watching how she and her husband dealt with his food issues over the weekend made me think about how people and families with T1D and severe food allergies face many similar concerns. (In fact, Bisi's diabetes has helped me understand on a visceral level the fear and sense of isolation that severe food allergies can bring to a family.)

First, there's that food is no longer that easy thing that you don't have to think about (especially at college, or a college reunion, where everything is placed before you in buffet form). My friend's husband expressed it perfectly: "Food may not be the enemy, but it is no longer carefree either." While everyone else was just putting whatever food was provided on their children's plates, my friend was inside heating up the special chicken nuggets she'd brought for her son--they had packed all his food for the entire weekend, just as they do whenever they travel. The only place he's able to eat out, his Dad told me, is Boston Market, which has a safe rotisserie chicken. For us, it's not that Bisi can't eat from the buffet, it's the effort and planning that has to go into it. Do they have the gluten-free option available (given, this restriction is self-imposed); how many carbs are in that potato salad? Will she like or accept the alternate drink I've brought her, because many of the other kids are drinking soda or juice? What's her blood sugar and how much insulin will she need before she eats? Should we give her less insulin than the calculations call for because she's going to be running around and swimming during the afternoon? Also, while we don't pack all her food, I make sure to have snacks with me at all times--sugary ones in case she's low; and low-carb ones in case she's hungry but on the high side. Also, packing all the diabetes supplies whenever we go away adds a whole new level of stress to the packing process, since there are things, like her insulin, which we absolutely can't forget.

There's also the fear that any parent of a child with a severe food allergy or a child with T1D faces every day. What if my child eats something with a trace of dairy and has a severe allergic reaction? What if my child, because of an insulin miscalculation or an unexpected low, which can be caused by illness or activity, goes so low that she becomes comatose? For allergies, the last resort, after benadryl, is giving the child a shot from an Epi-Pen, which gives the body an instant rush of a hormone that combats anaphylactic shock. For a diabetic, the last resort is a glucagon shot, which gives the body an instant rush of a hormone that raises blood sugar. The glucagon kit is something I carry with me whenever Bisi and I are out and about, just as the parent of a child with severe allergies carries an Epi-Pen. Melanie Thernstrom, who wrote a fascinating article in The New York Times Magazine about severe food allergies and is the mother of two children with such allergies, captures this fear well: "Food allergies amplify a kind of fear every parent experiences — of a child dashing suddenly into the street and, just like that, being gone. Your child is always playing near a precipice that is visible only to you: you may be able to keep her from falling off, but you can never move her away from the edge." And the truth is, because you're the one most often giving your child food (and, for Bisi, doing the insulin calculations that goes along with it), you also have the most chances to make a mistake. My friend's husband captured this reality when he told me: "We also, unfortunately, mess up about once a year with allergic reaction. Reactions are stressful events, filled with quick reactions including vomiting for few hours and then digestive issues (ie diarrhea) and monitoring for worse symptoms." Mark and I, too, have messed up. I'm sure most parents in this situation have. Bisi's lowest lows have happened when she's been under our watch, though so far, knock on wood, the glucagon kit sits unused in my bag.

The rate of food allergies in the U.S. has doubled over the past decade; the rate of T1D has doubled over the past two. Both are increasing at a pace that's faster than can be explained by genetics, but no one has figured out the trigger(s) for these increases. But a child with food allergies is much more likely to find peers at his school than a child with T1D; the rate for food allergies is 1 in 13 schoolchildren; the rate for T1D is about 1 in 600. Still, even though the rates are increasing, both food allergies and T1D set you apart. You may have to sit at the nut-free table at lunch, or stop by the nurse's office before lunch for a test and a shot. You might have to eat your own food at a birthday party, while everyone else is eating pizza and cake; or, worse, in some kids' minds, your Mom might be the only parent there, because she wants to make sure you're safe. And even though these young kids may not yet know or understand the most serious consequence of their condition, living with something chronic and dangerous means that they bear a weight on their (little) shoulders that few others their age have experienced.

It's no surprise that parents of children with severe food allergies have been among those who have been most supportive since Bisi was diagnosed. They've had me over for tea, to vent, share, and strategize about the challenges that pervade daily life for those affected by these two conditions. They've made it seem like no big deal to have Bisi over for a playdate and dinner, and to make sure there's something she can eat at their child's birthday party. And they've double-checked the menu with us before our family comes over, to make sure that everything works for Bisi, which makes those dinners easy, and--that rare feeling at mealtimes these days--carefree.

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Here's a recipe I adapted from The Refined Chef to serve to friends with a daughter with allergies to dairy, egg, sesame, fish, all nuts, and sunflowers. What I usually do is email the Mom the recipe ahead of time to make sure that it will work, though she also brings alternate food just in case. Given Bisi's own restrictions and the fact that there are a lot of other things Mark has cut out of his diet for health reasons--including nightshades (potatoes, tomatoes, eggplant, peppers, hot spices like paprika), pork, and beef--finding a recipe can sometimes be challenging. But this one was a hit. For this recipe to work for our family, I cut out the hot spices and I changed the rice from brown to black, which of all the rices has the lowest glycemic load. (Glycemic load is a concept I learned about from the book The End of Diabetes by Joel Fuhrman. Glycemic load differs from glycemic index in that it takes into account the nutritional value and fiber of a given food. I found the book to be kind of annoying because when he says "the end of diabetes" he really only means the end of type 2 diabetes; type 1 feels like kind of a forlorn side note in the book. But, the nutritional information in here has shaped our thinking on what we feed the kids and ourselves.) When we give Bisi meals with black rice, her blood sugars tend to be right on target with what we've calculated; whereas with white rice, her blood sugar spikes are difficult to control.

Ingredients:
2 1/2 lb whole chicken
2 tsp lemon peel
3 Tbsp lemon juice
1 Tbsp ginger, freshly grated
1/2 tsp turmeric, ground
1/4 cup cilantro, sprigs

Lentil Black Rice Pilaf (Note: the color of the finished dish is strikingly dark, kind of a deep purple. Our kids like it, but others, who are used to white or brown rice, have looked askance at it.)
1 cup brown lentils
5 cups water
1 Tbsp canola oil
1 cup onion, diced
1 clove garlic, minced
1 Tbsp ginger, freshly grated
2 cups carrots, chopped
1 cup black rice
1 tsp cumin, ground
1 tsp garam masala, ground (I left this out, and added a bit more of the other spices)
1 tsp coriander, ground
1/4 cup cilantro, minced

Serving size: 6
Prep time: 10 minutes
Cook time: 75 minutes

Directions:
1 Preheat oven to 350°F (175°C).
2 Place chicken in large bowl. Mix fresh lemon peel, lemon juice, grated ginger, and turmeric for marinade and pour over chicken. Use a spoon or you hands to coat top all sides of chicken. Add some of the marinade to the cavity. Marinate in the refrigerator for at least an hour or preferably overnight.
3 Roast chicken in oven for approximately 75 minutes or until cooked through and internal temperature reaches 185°F (85°C).
4 Bring lentils and 5 cups (1.25 L) cold water to a boil in large pot or Dutch oven. Reduce heat to low, and simmer 15 minutes, or until lentils are firm but tender.
5 Heat oil over medium high heat in non-stick skillet. Sauté onion with garlic and ginger for five minutes, or until just golden. Add carrots and rice, and cook 3 minutes, or until rice is toasted and fragrant, stirring constantly. Add cumin, garam masala, and coriander and cook another minute. Add enough water to cook rice according to package directions. Cover and reduce heat to low and cook about 20 minutes, or until liquid is absorbed and rice is tender.
6 Remove from heat and stir in ¼ cup cilantro.
7 Stir in cooked lentils when rice is finished cooking. Keep warm.
8 To serve place roasted chicken in centre of platter and place rice pilaf around chicken. Garnish with sprigs of fresh cilantro (optional garnish). Carve chicken at the table.

I served this with broccolini roasted with olive oil and salt for about 25 minutes at 400 degrees.

More on the "Teeming, Quasi-Wilderness" Within Us

Apparently I'm not the only one thinking about the microbiome these days. Many of you have probably already seen Michael Pollan's article in The New York Times Magazine a couple of weeks ago.

A couple of quotes jumped out at me:

"Our resident microbes also appear to play a critical role in training and modulating our immune system, helping it to accurately distinguish between friend and foe and not go nuts on, well, nuts and all sorts of other potential allergens. Some researchers believe that the alarming increase in autoimmune diseases in the West may owe to a disruption in the ancient relationship between our bodies and their 'old friends' — the microbial symbionts with whom we coevolved."

The new thinking on the microbiome and how its diversity of bacteria are essential to our health won't, I don't think, lead to a cure for T1D; but I do think that once scientists understand how to rebuild a healthy microbiome, the incidence of T1D and other autoimmune diseases will drop. I also think diabetics who are able to recreate a healthy microbiome may see their insulin needs decrease.


Anyone can learn exactly what bacteria live inside them by getting tested through the American Gut project. Comparisons of "American" guts with those who don't take antibiotics and eat no processed food have shown stark differences:

"Preliminary results indicate that a pristine microbiome — of people who have had little or no contact with Westerners — features much greater biodiversity, including a number of species never before sequenced, and, as mentioned, much higher levels of prevotella than is typically found in the Western gut. Dominguez-Bello says these vibrant, diverse and antibiotic-naïve microbiomes may play a role in Amerindians’ markedly lower rates of allergies, asthma, atopic disease and chronic conditions like Type 2 diabetes and cardiovascular disease."

The scientists who specialize in this field place little faith in the probiotics proliferating on grocery shelves. But here are the measures they do tend to take in terms of building the health and diversity of their gut bacteria:

"I began asking them ... how, in light of what they’ve learned about the microbiome, they have changed their own diets and lifestyles. Most of them have made changes. They were slower to take, or give their children, antibiotics. (I should emphasize that in no way is this an argument for the rejection of antibiotics when they are medically called for.) Some spoke of relaxing the sanitary regime in their homes, encouraging their children to play outside in the dirt and with animals — deliberately increasing their exposure to the great patina. Many researchers told me they had eliminated or cut back on processed foods, either because of its lack of fiber or out of concern about additives. In general they seemed to place less faith in probiotics (which few of them used) than in prebiotics — foods likely to encourage the growth of “good bacteria” already present. Several, including Justin Sonnenburg, said they had added fermented foods to their diet: yogurt, kimchi, sauerkraut. These foods can contain large numbers of probiotic bacteria, like L. plantarum and bifidobacteria, and while most probiotic bacteria don’t appear to take up permanent residence in the gut, there is evidence that they might leave their mark on the community, sometimes by changing the gene expression of the permanent residents — in effect turning on or off metabolic pathways within the cell — and sometimes by stimulating or calming the immune response."

Pollan later adds a bit more detail on the types of food to seek out in order to take care of the "teeming, quasi-wilderness" within:

"Viewed from this perspective, the foods in the markets appear in a new light, and I began to see how you might begin to shop and cook with the microbiome in mind, the better to feed the fermentation in our guts. The less a food is processed, the more of it that gets safely through the gastrointestinal tract and into the eager clutches of the microbiota. Al dente pasta, for example, feeds the bugs better than soft pasta does; steel-cut oats better than rolled; raw or lightly cooked vegetables offer the bugs more to chomp on than overcooked, etc. This is at once a very old and a very new way of thinking about food: it suggests that all calories are not created equal and that the structure of a food and how it is prepared may matter as much as its nutrient composition."

This field is still in its infancy, but I wouldn't be surprised if a decade or two down the road our thinking about autoimmune diseases like T1D—and perhaps about other scourges too, like cancer and heart disease—is inextricably linked to those trillions of bacteria that live inside us.

The Microbiome and T1D

I have one word for you: microbiome.

There has been a lot written about it lately, including a good article in the October 22, 2012, New Yorker by Michael Specter in which he lays it out better than I could:

"As we pass through our mother’s birth canal, we begin to attract entire colonies of bacteria. By the time a child can crawl, he has been blanketed by an enormous, unseen cloud of microorganisms—a hundred trillion or more. They are bacteria, mostly, but also viruses and fungi (including a variety of yeasts), and they come at us from all directions: other people, food, furniture, clothing, cars, buildings, trees, pets, even the air we breathe. They congregate in our digestive systems and our mouths, fill the space between our teeth, cover our skin, and line our throats. We are inhabited by as many as ten thousand bacterial species; these cells outnumber those which we consider our own by ten to one, and weigh, all told, about three pounds—the same as our brain. Together, they are referred to as our microbiome—and they play such a crucial role in our lives that scientists ... have begun to reconsider what it means to be human."

These colonies of bacteria have been under attack--each time one of us takes broad-spectrum antibiotics our microbiome takes a hit--and, in modern times, each successive generation is born with fewer of them. Some scientists think that destruction of the microbiome is responsible for increasing rates of asthma, Crohn's disease, severe allergies, and other conditions--including Type 1 diabetes.

This was the gist of a talk Mark and I went to a couple weeks ago, organized by the JDRF, which sponsors research into the prevention, treatment, and cure of T1D. The talk was part of their spring research briefing, where they give donors a sense of the lines of inquiry that their money is funding.

During the cocktail hour beforehand, Mark and I talked about what an unexpected turn our lives have taken. Who could have believed a year ago that we'd be spending an evening at a Sheraton in the suburbs, eating fruit or "mashed potato martinis" (actually, they were pretty good), and needing to know about the latest thinking on type 1 diabetes?

All of the talks were good; I'll summarize the most salient parts of them here, though frankly, they were not easy for someone like me, with no medical or scientific background, to understand. But the one that really grabbed our attention was by Ramnik Xavier, an MD, Ph.D. at Harvard who runs a lab at MGH studying the microbiome.

Here are some of the things we learned; I have done my best to rephrase them for the lay person.

From Dr Julia Greenstein, vice president of cure therapies at JDRF:
Since 2001, scientists have been able to replenish peoples' beta cells (the cells that produce insulin) through islet transplantation from cadavers. The catch is that, without heavy doses of immuno-suppressive drugs, the body will attack these foreign cells. So right now, for most people, the cure is worse than the condition. So far, this technique has mainly been used on people with severe hypoglycemic unawareness--meaning they cannot feel dangerous lows of their blood sugar. A potential cure for T1D would be to figure out a way to keep the body from attacking the healthy new beta cells: "We have to take those cells and figure out a way to put them in a bubble."

(Hypoglycemic unawareness is something we have to watch for with Bisi. Right now, if she's low, meaning a blood sugar below, say, 70, she tends to be cranky, hungry, and a bit out of sorts. The worry is, if you experience too many lows, your body may start to think this is "normal" and you will no longer feel the warning signs. Of course, Bisi's condition has made all of us more attuned to how we feel before and after meals. Recently, after exercising and on a day when I hadn't had a big lunch, I felt very shaky and hungry. I told Bisi, and we decided that I'd test myself with her meter. It turned out I was at 62--right at the borderline of what's too low for someone without diabetes. Bisi's target range is higher--from 80-180--so she has more of a protective cushion for the lows. But I think this shaky-hungry feeling is similar to what Bisi feels.)

Greenstein also talked about how scientists' understanding of beta cells and diabetes is evolving. People used to be taught that someone with T1D had zero beta cells left. But in some cases--maybe in all cases--that turns out not to be true. She pointed to the example of a man who had had T1D for 50 years and upon his death gave his pancreas to the Joslin Diabetes Center for research. It turned out that his pancreas still had some beta cells. If researchers could figure out how to proliferate and protect these remaining cells, that might help give diabetics better control of their blood sugar.

Greenstein moved on to talk about preventing T1D in those who are prone to it. The incidence of T1D is doubling every 20 years--a startling increase. And more people are being diagnosed at a younger age. While Mark and I were told in the hospital that T1D comes on very suddenly, when the immune system starts attacking the pancreas, Dr. Greenstein had a slightly different take. She explained that when the immune system starts attacking the pancreas, you start losing beta cells. But people usually aren't diagnosed until they've lost 80 percent of those cells. The goal is to diagnose people earlier, when fewer of their beta cells have been destroyed, and to figure out a way to stop the autoantibody response. Her interpretation fits Mark's and my view of Bisi's disease--as I've mentioned before, we feel like she was experiencing fluctuations in her blood sugar long before she was diagnosed.

Even better than diagnosing people earlier would be to keep the T1D process from starting in the first place. To this end, another line of research is "primary prevention"—universal childhood vaccination, which would in theory protect children from developing the disease.

Dr. Michael Brehm, an assistant professor in the Program in Molecular Medicine at UMass Medical School, talked about his efforts to study the T1D process from A to Z through "humanized" mice. "These mice are like test tubes, they have no immune system, so you can implant various disease into them." Once his lab understands how T1D works in these mice--from the initiation of the auto-immune process to progression of the disease--they can test both what triggers the disease and how to cure it.

Dr. Jeffrey Karp, an associate professor at Harvard Medical School, Brigham and Women's Hospital, talked about the use of "biomaterials" to encapsulate or protect beta cells from being destroyed by the immune system of someone with T1D. Much of his talk and research work does not really have to do with T1D (in fact, someone in the audience yelled, "We're here to learn about type 1 diabetes!!"). But part of JDRF's goal, as Dr. Greenstein pointed out, is to be multi-disciplinary--to see how existing or developing medical technologies and thinking can be applied to T1D.

Okay, now back to where I started, with the microbiome and how it could potentially tie into T1D.

JDRF has been funding the work of Dr. Xavier, who is looking into the potential ties between T1D and the gut bacteria in our microbiome. The microbiomes of people with T1D are different from those without, and scientists speculate that decoding these differences could help us understand why some people get T1D and others don't. As Xavier explained, his introduction to T1D "stemmed from an observation that in certain parts of the world there has been an explosion of T1D incidence: I think it could be because of the bugs in the gut." Xavier pointed to a study of two genetically similar populations--one in Finland, the other in Karelia, part of Russia. The population base is the same, but in the last several decades, the standard of living has risen much faster in Finland than in Karelia--and so has the rate of T1D. Finnish children now get T1D at six times the rate of their Karelian counterparts. "The genetics are almost totally similar—something is different. What is it?" (Last month's Smithsonian magazine has a good explanation of this research.)

Could it be higher use of antibiotics, which can damage the microbiome (Xavier cited the work of David Relman at Stanford). Could it be, because of fewer vaccinations or poorer health care, that the immune systems of Karelian children face more bacterial challenges than those of Finnish children, and that their gut bacteria is therefore different? Could it be differences in the types of food the two populations eat? (Consuming probiotics is another way to alter our gut bacteria, though Dr. Xavier, among others, says that none of the over the counter probiotics that have grown so popular in the U.S. has been shown to be of any use.)

Xavier is trying to understand the precise "bacterial signature" of the microbiome of children with T1D. How exactly is it different from those of healthy children? Could material from someone's "healthy" gut be injected into the gut of someone with T1D? Would it help? Are the gut bacteria different in diabetic children with "tight" glucose control versus poor glucose control? Xavier has "roomfuls of data we need to analyze" on the microbiomes of Finnish children with and without T1D. He sees understanding differences in the microbiome as a potential way to prevent, treat, or even cure T1D. In the meantime, he told me via email, there's not much we can do to support Bisi's gut bacteria other than have her eat yogurt and avoid antibiotics unless she really needs them. This line of research makes sense to us and feels like it has some promise. Until then, it's a good thing that Bisi likes yogurt.

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?