Thursday, June 13, 2013

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.

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