FeaturesApr/May 2011 Issue

Postcards from Allergy-friendly Camp

Special-diet kids have fun and stay safe at summer camp

For many parents, sending a child away to summer camp in a remote location, miles from home, requires a leap of faith. But when your child has a life-threatening anaphylactic food allergy or life-changing celiac disease, it’s even harder to entrust his or her life to strangers. In addition to asking about camp sports and specialties, you must ask about the closest hospital. In addition to packing bug spray and rain gear, you’re packing EpiPens and coolers of safe food.

Attending day camp or overnight camp can be very rewarding for kids with food allergies and celiac disease, opening up new opportunities and boosting self-confidence and self-reliance. However, it takes careful research and planning to select the right camp and to prepare your child.

Allergy-Friendly Camping

Kristine Trone grew up attending church camp every summer—and loving it. But she wondered if her children would ever enjoy a similar experience. Her son Kaleb, 7, and daughter Casey, 4, have multiple food allergies, including five that are life threatening.

“The thought of sending my kids to church camp was definitely scary. You’re dealing with untrained volunteers—grandmas, aunts and moms cooking the food,” she says.

When she discovered Camp TAG (The Allergy Gang), a new program offered through the Food Allergy & Anaphylaxis Network (FAAN), she jumped at the chance to enroll her kids and to volunteer at the 5-day, morning-only camp. Camp TAG, which launches this summer in three locations (Joliet, Illinois; Philadelphia and Sandy Spring, Maryland), is designed to provide a fun and safe camping experience for kids with food allergies and sensitivities, as well as their siblings.

Trone’s commitment is such that she’s sending her kids to Camp TAG in Joliet, although they live almost three hours away in Galesburg, Illinois. They’re planning to make a family vacation out of it, staying in a hotel for a week and exploring the area.

“Camp is such an awesome experience,” she says. “Kaleb wants to go out and play with his friends and not spend so much time focusing on his food allergies. They’re both thrilled to be in a place where they’re like all the other kids.” Still, Trone admits she gets anxious. Kaleb almost died from an anaphylactic reaction when he was 3 years old.

“To be honest, I’m nervous any time I place my child’s life in the hands of someone else. That being said, they’re going to be in the safest camp they can attend. I feel good about it and they’re excited about it. We are going to walk forward with it—and trust.”

FAAN is piloting Camp TAG for five mornings, 8:30 a.m. to 12:30 p.m., for children ages 3 to 12. Enjoy Life Foods is providing safe snacks for campers. Other than that, there’s no food at all, “just a safe place for children to go to camp and be kids,” says Eleanor Garrow, FAAN’s vice president of education and outreach.

“Once we add lunch, it’s a whole different undertaking. We’re starting small but our goal in future years is to expand to a full-day camp,” says Garrow, adding that “so many kids with food allergies want to go to a regular camp but parents are worried about anaphylactic reactions.”

<br>© Kuttig-RF-Kids/Alamy


© Kuttig-RF-Kids/Alamy

Garrow should know. She started planning Camp TAG two years ago to provide a safe camp experience for her son, now 7, who has food allergies, eosinophilic esophagitis, asthma and environmental allergies. Her avocation turned into a vocation when FAAN offered her a full-time job and took Camp TAG under its wings.

Camp TAG will be 95 percent fun and 5 percent educational, Garrow says. The first 15 minutes of each day will be devoted to games and activities dealing with food allergies, anaphylaxis and nutrition. Friday will be a family entertainment day. The rest of the time will be typical summer camp fare—dance, music, arts and crafts, sports, swimming, rope courses, canoeing. Since the camp is sensitive to children with asthma, indoor and outdoor activities will be rotated so kids aren’t playing in the heat all day.

The staff includes a nurse who specializes in food allergies, anaphylaxis and epinephrine administration, and all camp sites are within five miles of a hospital. Camp counselors are primarily parents and teen volunteers who also have food allergies.

“Kids with food allergies and their siblings can meet others with similar conditions and know they’re not alone,” Garrow says. Her goal is to extend the camp to more locations and launch a one-week overnight camp for ages 12 to 18 in Sandy Spring, Maryland, next year.

Gluten-Free Camping

For kids with celiac disease, various groups and foundations, including the Celiac Sprue Association and the Gluten Intolerance Group (GIG), sponsor week-long overnight camps. Some have camps dedicated only to gluten-free kids, while others, like GIG camps, integrate gluten-free campers into a mainstream camp while maintaining a dedicated gluten-free kitchen. This year, New Jersey Y Camps is partnering with the Celiac Disease Center at Columbia University to create a separate gluten-free kitchen that will prepare all food and snacks for any campers with celiac disease.

In the summer of 2009, Rachel Zemil attended a week-long gluten-free overnight camp at YMCA Camp Manitou-Lin in Middleville, Michigan. While her mother, Marianne, recalls the safe food and the staff’s watchful eyes, Rachel remembers the more typical summer camp moments, like horseback riding, swimming and playful pranks.

“I thought it was really fun,” says Rachel, who was 8 at the time.

Rachel was sponsored by the Celiac Disease Foundation, which awards scholarships to kids who write essays describing how they will benefit from going to camp without worrying about their food. Rachel says she looked forward to camp because, “When I’m in school, I feel left out. At birthday parties in class, they don’t think about bringing food that I can eat.”

Not so at camp. Before Zemil dropped off Rachel at camp, she sat down with a nurse and discussed her daughter’s celiac disease, dairy and citrus allergies and her other autoimmune conditions. Campers who had a food allergy in addition to celiac had to wear a wristband and show it when they ate, adding another layer of assurance for Zemil.

“I told Rachel that I would not have been comfortable sending her to an overnight camp if it wasn’t a celiac camp,” Zemil says. “Even though I know that she knows what she can and cannot eat, I would’ve been nervous about cross-contamination.”

Camps that Accommodate

Searching for a summer camp that can provide gluten-free or nut-free meals can be nerve-wracking. More camps, however, are doing what they can to accommodate kids with special diets. Still, it requires thorough research to find a facility with a knowledgeable, proactive staff.

Ellen Byck’s 14-year-old daughter Sasha is going into her fifth summer of sleep-away camp, even though she has anaphylactic peanut and pea allergies in addition to celiac disease.

“My first thought when we found out that Sasha had celiac diseae was, Oh my God, how is she going to go to sleep-away camp?” Byck says. “Camping was one of the highlights of my childhood.”

After researching other camps–some of which showed a disappointing lack of concern for her daughter’s health–Byck ended up sending Sasha to her alma mater, Camp Kennybrook in Monticello, New York. The camp is peanut free, which eases her worries, but she made the decision to provide her own gluten-free food.

“I make all of Sasha’s food. My daughter goes with peace of mind and so do I,” says Byck, who lives in Chappaqua, New York.

“I make her a big batch of pancakes and freeze them. I send up pizzas, pasta, Udi’s muffins and Udi’s bread, so they can make her grilled cheese sandwiches. I bake tons of chocolate chip cookies. I make chicken Parmesan and I make a big batch of chicken nuggets. I found out their hamburgers and hot dogs weren’t gluten free, so I buy my own hamburgers and hot dogs and put them in aluminum foil so she has them,” Byck says.

“I was working full-time with two kids. The first year I did this, I called my mother on the phone and started crying because I was so exhausted.” But the effort paid off, Byck says. “Sasha loves camp. It’s her favorite thing in the world. She has a count-down calendar every year.”

Before Sasha’s first year of camp, Byck looked at the menu to try to match the foods she was providing with the meals being served. She also sat down with the head counselors, the director of the kitchen and the entire kitchen staff to discuss Sasha’s gluten-free diet in detail.

“Even if a camp says they can accommodate a child, I think it’s important to find out what type of food they serve,” Byck says, noting that kids often prefer certain brands of gluten-free breads and pasta over others. She also recommends checking with the camp to see if there’s a discount for providing your own food.

“So many camps now will make food separately or do whatever it takes to accommodate food allergies,” she says. “Shopping around for the camp that fits best is a great idea.”

The Right Thing to Do

Mainstream camps give kids with food allergies fun, life-enriching experiences, says Jason Sebell, assistant director of Camps Kenwood and Evergreen in Wilmot, New Hampshire. Nine years ago, the two overnight camps realized they needed to embrace special diets when more and more food-allergic children in the community wanted to attend camp.

It started when Sebell noticed that the youngest child in a visiting family was visibly upset. “He said to me that he realized he couldn’t come to our camp because of his severe nut allergy,” Sebell says. “This family was so beloved in our community, we realized that we needed to make a change.”

The Kenwood and Evergreen staff sat down and talked about new procedures. The first challenge: Many kids exist on peanut butter during the summer. The staff researched brands of soy butter and sunflower butter and held a blind taste test to pick the best one.

When the camp announced it would be peanut-free and tree nut-free, only two parents complained, saying their kids couldn’t survive without peanut butter. Sebell sent them each a jar of soy butter and asked them to try a test at home: substitute the soy butter in sandwiches and see if their kids noticed a difference. They didn’t.

Now the New Hampshire camps attract kids with food allergies from Connecticut, New York, New Jersey, Maryland, Illinois and California. “This is part of our mission, to provide as safe and as nurturing an environment as possible,” Sebell says. “At this point, so many families have allergies. It’s a different world and I mean that in a positive way.”

A few years ago, a personal incident further reinforced Sebell’s inclusiveness.

“My sister was diagnosed with celiac disease. She didn’t learn about it until she was 21 and was a counselor at camp,” Sebell says. “I certainly wasn’t going to say to my sister, ‘No you can’t come here. Our kitchen can’t accommodate you.’”

So now the camps “happily accommodate” other special diets, including gluten free and dairy free, Sebell says. They aren’t just peanut free and tree nut free, they’re “peanut and tree nut aware,” meaning that they have heightened awareness of food allergies around the clock. If counselors eat at a Chinese restaurant on their day off, for example, they think about whether they’ve been exposed to nuts and scrub their hands, wash their face and brush their teeth before returning to camp.

“I want all our kids, counselors and staff to keep this question in the back of their minds: Are we walking the walk on this? We can’t slip up,” Sebell says. “The boys’ head counselor has life-threatening peanut and tree nut allergies. I tell future campers that the head counselor doesn’t just understand your allergy, he lives it.”

At Camps Kenwood and Evergreen, food is served family style but kids with special dietary needs go to a window in the dining hall where the chef has individually cooked and wrapped meals for them. Parents bring some of their children’s favorite gluten-free food to start the summer, since tastes vary widely. Once the kitchen knows the kids’ favorite brands, the camp buys more throughout the 7-week session.

When the camp takes trips, counselors are equipped with EpiPens, liquid Benadryl, cell phones and emergency plans.

“Our children, regardless of their allergies, go on all sorts of trips that make up the summer experience—to the beach, state parks, caving, canoeing, water parks—just like every other child in our community, and they never have to think about it. They can go water skiing, rock climbing, hiking and not feel like they’re living in a bubble,” Sebell says. “Our mandate is to help kids with allergies and food intolerances live as normal an experience as possible in a mainstream camp.”

Eve Becker (glutenfreenosh.com) is a Chicago-based writer.

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