Friday, January 11, 2013

The Elephants in the Room

 Do you remember when you first brought your baby home, and you would find yourself checking on her, just to make sure she was still breathing? Do you remember that fear you felt for someone who seemed so vulnerable? 

That fear dissipated for me once Jamie and Bisi were no longer tiny infants, but the diabetes diagnosis has brought it back.

There are several reasons why a t1D diagnosis is so scary (though there are many worse and scarier diagnoses to have). Diabetes can kill someone quickly, through severe low blood sugar caused by the insulin people with t1D must take. Or it can kill someone slowly, through heart disease, kidney failure, or one of the many other conditions that t1D can cause. But with careful management and probably some luck too, diabetics can live long, healthy lives.

Still, there are many times since Bisi was diagnosed that I have had that catch of fear, and have gone in to check on her while she’s sleeping, just in case. The many blood sugar tests we give Bisi each day are both to gauge how much insulin she needs at meals, and to make sure that the insulin isn’t pushing her too low. Each night, before we go to bed, we test her while she’s asleep. If her blood sugar is below 80, we need to wake her up to get her to drink some quick-acting sugar like apple juice. If it’s between 80-100, she drinks something slower acting, like milk. If it’s above 250, we give her a half unit of insulin to bring her glucose level down. In any of those cases, we check her again at 2 am to make sure she’s not too low. If the blood sugar of a person without diabetes starts going low, the pancreas releases a hormone called glucagon, which calls on the liver to release stored sugar. Bisi’s pancreas doesn’t work that way anymore, so she needs to eat something with sugar to bring her blood sugar up.

She could go too low during the day for one of many reasons—we could overestimate the carbs she’s eating and give her too much insulin; we could mess up her dose, giving her a unit rather than a half unit; physical activity can make blood sugar plunge (we make sure she’s at 150 before doing something strenuous), as can a fever or stomach virus. (In fact, getting sick is much more serious for diabetics than for others—please don’t bring your child over to our house if you know she’s sick!)

All this is to say that the world suddenly feels like a much scarier place in terms of Bisi, and at a time when she should be putting some distance between herself and her parents—going to camp, going over to a friend’s house after school, or for a slumber party or birthday party—it takes a lot of planning to give her a semblance of independence.

The first time after her diagnosis when I let her do something without me, she went with her brother to a fishing camp for a couple of hours. I tested her before she left, instructed the counselor to give her a snack with carbs at a certain time, and gave the counselor some apple juice to give to her just in case. Still, ten minutes after I’d driven away I freaked out, and called the counselor to ask him to give her half the apple juice—it’s less immediately dangerous to be too high than too low. And then, even though I was playing tennis with people I didn’t know, I stepped off the court twice, in the middle of points, to answer my phone, worried that it was someone calling from the camp (it wasn’t; and no, I wasn’t invited to play tennis with them again!).

I am not inherently a worrier, but with this it’s impossible not to be. It’s a leap of faith for any of us when we leave our child in someone else’s care. But that leap is now much bigger than it used to be where Bisi is concerned. Every day, Mark and I need to trust that the school nurse will give Bisi the right dose of insulin; that the gym teacher will watch for signs of lows while she’s running around, that the mom who takes her home for a playdate will keep a special eye on her.

As long as I’m talking about fear, I might as well go all the way and talk about grief. I read a great post recently on the diabetes site A Sweet Life, by a clinical psychologist who went through the five stages of grief  after being diagnosed with diabetes. She said in the piece, “I mention my mother because even though I was not a child anymore, she too grieved my diabetes.  All parents do.” I had never thought about it that way before, but she’s right. Even though Bisi can live a long, healthy life, I feel terribly sad for her, and for us. Sad that she will need tens (hundreds?) of thousands of blood tests and injections; sad that what she can eat and how she lives is so much more regimented and restricted than it was before; that she faces health consequences and worries that a six year old shouldn’t even have to know about or think about. And I feel sad, even though she is a girl who takes an enormous amount of pleasure out of life—when she loves something, you know she loves it by the huge smile on her face and the irrepressible giggle she lets out of her mouth—that she knows her life is shadowed by this. The other day, looking at our Elf on the Shelf who had been lurking for several days on a sidetable in the living room, she asked me:  “Do you think if I ask Elf for something he’ll pass it on to Santa Claus?”  She whispered something to Elf that I couldn’t hear then said, “Well, I guess I can tell you what I asked him. I asked him if he could maybe do something about my diabetes.”  “You mean to help make it better?” “Yes.” If only Santa were so all-powerful. All I could do was give her a hug.

 Risi for Bisi

This recipe is definitely not the tip top choice for someone with diabetes, since it involves a lot of starchy white rice. But it is one of Bisi’s favorite dishes—partly because of its cheesy, comforting deliciousness, and partly because it shares her name. So I still make it for her now and then. We found it one day when she asked me whether there were any other Bisis out there. We did a Google search together, and up popped a recipe for “Risi e Bisi” (Italian rice and peas). The version I make is adapted from Martha Rose Shulman’s Recipes for Health in The New York Times—a great resource in general. 

About 7 cups chicken or vegetable stock, as needed
2 tablespoons extra virgin olive oil
1/2 cup minced onion or spring onion
Salt, preferably kosher salt, to taste
1 1/2 cups arborio or carnaroli rice
1 garlic clove, minced
1/2 cup dry white wine, such as pinot grigio or sauvignon blanc
A package of frozen petite peas
2 sweet Italian sausages
Freshly ground pepper
2 tablespoons chopped fresh parsley
1/2 cup grated Parmesan cheese

1. Put your stock or broth into a saucepan, and bring it to a simmer over low heat with a ladle nearby or in the pot. Make sure the broth is well seasoned.
2. Heat the oil in a wide, heavy nonstick skillet or saucepan over medium heat. Add the onion and 1/2 teaspoon salt, and cook gently until tender and translucent, about five minutes. Add the rice and garlic, and stir until the grains of rice are separate and beginning to crackle. Add the wine, and stir until it has been absorbed. Begin adding the simmering stock two ladlefuls (about 1/2 cup) at a time. The stock should just cover the rice and should be bubbling, not too slowly nor too quickly. Cook, stirring often, until the liquid is about absorbed. Add another ladleful or two of the stock, and continue to cook in this fashion, adding more stock when the rice is almost dry and stirring, for 10 minutes. Taste now and correct seasoning.
3. Meanwhile, cut the casing off the two sausages, and cook them in a frying pan, breaking them up into small pieces.
4. Add another ladleful or two of stock to the rice.  Add the frozen peas. Stir in the pepper, parsley, sausage, and the Parmesan, and remove from the heat. The mixture should be creamy (add more stock if it is not). Stir once, and serve right away.

Serves four to six


  1. I stumbled across your article in the Atlantic and then read your blog with interest. I think it's great that you're taking all these steps to help your daughter, like the gluten free diet and the vitamin D supplementation.

    I'm commenting here because I would like to make sure you are aware of Paleo diets, and more particularly about (I'm not affiliated with them, just a fan). Basically, a Paleo diet goes back to before-agricultural times to get hints about what our bodies are evolved to eat. Perfect Health Diet has a wonderful book looking at many studies for pros and cons, determining an optimal way to eat. Many people have found much-improved health by eating that way.

    I realize I'm just a random fellow from the internet and there are websites claiming to achieve anything you want, but if you would take a look and preferably read the book, you'd hopefully see that Paleo or PHD make a lot of sense from a health standpoint.

    Paleo excludes gluten like you do, and PHD recommends optimizing VitD level to 40ng/ml by supplementing or sunshine, just like you're doing.

    BTW, auto-immune diseases are not only triggered by wheat, any allergen can probably do it. It's a corner of medical science that is still in its infancy. So avoiding soy and most grains would also be prudent in my opinion.

    One more thing, coconut oil contains 50% MCT, Medium Chain Triglycerides, which get converted in our body to ketones. Ketones are interchangeable with glucose for feeding the brain but they don't cause high blood sugar. Something to consider giving as an energy source, partially replacing carbs.
    Note that many doctors are only aware of ketoacidosis which occurs when diabetes is uncontrolled. It kills you because the level of ketones is thousands of times higher than normal causing acidity of the blood.

    Finally, that recipe looks yummy! Note that adding fat or acids to starch will cause them to digest slower, which lowers blood sugar spikes. Good for diabetics I'd say.

  2. I'm right there with you on the grief and fear. We feel a good bit better now that Eleanor has a Continuous Glucose Monitor that will alarm if she goes low during the night. It can't go more than 20 feet from her, so we put it on her nightstand next to a baby monitor, and I can hear the alarms through the receiver. She makes us call it a "girl monitor" though.

    Oh, and we got the Disney cookbook too. Eleanor's favorites are the Pochohantas Trail Mix Balls. They are perfect for her bedtime snacks. They contain oatmeal, but you could make them with gluten free oats.