Lori Sandler

Summer Challenges: Managing Food Allergies

June 13, 2012 by The Motherhood

I’ve heard that there are families out there who travel, stopping for a bite to eat whenever and wherever they feel like it. Families for whom the worst danger from a birthday party or carnival is a kid hopped up on sugar. Families that send their kids to sleep-away camp, trusting that the scariest thing their child will encounter in the mess hall is the mystery meat.

None of those families have a kid with food allergies, though.

The incidence of food allergies has skyrocketed in the last two decades, and almost everyone seems to have a kid with one (or more), or to know someone who does. Summer experiences that are fun for most kids, like camp, cookouts, and parties, are daunting and potentially deadly for families dealing with food allergies (FA).

Today in The Motherhood we were so fortunate to have a large panel of moms sharing their experiences and wisdom in dealing with this particular challenge. Lori Sandler, Susan Weissman, and Sandra Beasley were joined by panelists Sloane (Allergic Girl), Nicole (Allergic Child), Jen, Jodi, Sarah (The Allergist Mom), Barbara (Food Allergy Initiative), and Kelly (Food Allergy Mama). These wonderful moms weighed in on a number of situations that parents of FA kids deal with every summer.

On camp…

Lori reminds us that camp “is all about fun, and should not be stressful.” To keep it that way, we have to make sure our kids feel safe. This starts with the selection of the camp in the first place. Not all camps have the resources to deal with food allergies. Get recommendations from trusted friends, allergists, and allergy-friendly Facebook pages. Susan offered TheCampLady.com as a resource for locating allergy-friendly camps. Once you find a camp, Lori recommends talking to the camp owners at length and getting a feel for their philosophy, because you really need to feel able to trust them. Nicole and Kelly agreed that awareness of allergies is very much on a camp-by-camp basis.

Susan also emphasizes, “Trust in the counselor is crucial since they are there in the minute by minute. I think that simply talking to them about it in an open, calm, and anecdotal way really helps. Let them know that e-mailing or calling you is NEVER a bother.” And Sandra noted, “Consider going in to meet with folks with a copy of an Emergency Action Plan (if you have one) or else a one-page sheet that lists all allergens, likely points of exposure (not only food but CRAFTS), and prescribed course of response. Offer to bring in several laminated copies to make it easier on camp staff.” Having a small picture of your child in the corner of the sheet can help, too.

Another resource that can be helpful to camp staff is this snack list offered by Susan. Nicole has an ebook on her AllergicChild.com site about traveling and eating out with food allergies that also includes preparing for summer camp.

One critical safety tip from BestAllergySites: “Make sure the EpiPen follows your child. There are some camps/staff that will leave it in the medical kit and then stray from the kit to do various activities with the kids. The medical kit should always be close by. Also, make sure the counselor in charge of your child can and will administer if necessary.” If possible, having your child wear the EpiPen on his person in a waist pack is a good option.

On Cookouts…

Even if peanut satay isn’t on the menu today, that doesn’t mean the grill is safe. Hosts who may have been careful in their ingredient preparation may have forgotten about potential cross-contamination from previously grilled foods. Sandra recommends taking along an extra roll of aluminum foil and a separate set of tongs to create an allergen-free zone for grilling. On the bright side, she points out, summer desserts like watermelon are usually much safer than baked goods!

On Traveling…

Barbara offered this terrific resource for families traveling with food allergies this summer. Sarah reminded us never to leave an EpiPen in the car, especially in summer heat, which can quickly destroy the effectiveness of this medication. You can find guidelines for EpiPen storage here. While EpiPens shouldn’t get too cold, either, Sarah says a cooling pack can help keep them closer to room temperature.

And what about that adjunct to the great American tradition of the road trip – eating on the road? While you may not be able to just pop in to any old roadside stand for a bite, there are options, especially if you’re willing to plan. Susan says she’s had success avoiding restaurants and packing picnic lunches to be eaten in state parks. Jen agrees, noting that “picnics tend to be cheaper and much less effort anyway.”

Sandra says she gets tired of never having hot food on the road, though, and says that for shorter trips, she’ll pack something microwaveable, like organic Amy’s wraps or rice bowls, because many gas stations have microwave ovens where she can heat up her food. What a great idea! Along similar lines, Sarah says, “My mom got us a cooler/warmer that plugs into the outlet in the front of the car! It has been a life-saver on warm days to keep food cool (or in the winter when you need to keep food warm).” Divvies.com and Tasterie.com also offers lots of road-friendly foods.

But getting there, as they say, is only half the fun. When you arrive, you may have to deal with hosts who don’t have as thorough an understanding of food allergies as you would like. One option, of course, is staying in a hotel where you can prepare your own food, as several of the moms in the discussion like to do. As Susan observes, however, that can get expensive, and sometimes it’s just not practical. If staying with friends or family, Lori advises, “Start by having an in-depth discussion with your potential hosts to get a sense of their willingness to keep an allergen-safe environment. Calling restaurants and grocery stores ahead of time can prove very helpful.” It’s a judgment call; staying in a hotel may keep you away from Grandpa’s cashew addiction, but being in a house offers you more opportunity to cook and store food and to thoroughly wash pans and dishes.

On Summer Jobs…

For teenagers, getting a summer job is a rite of passage, and many (if not most) of the summer jobs available to teens are in restaurants. Sandra says that her parents “flat-out vetoed (her working in a restaurant) out of fear. But in hindsight, I wish we’d sat down to brainstorm options that didn’t require direct exposure to food – hostessing, for example, or making deliveries. It’s as important to cultivate independence as it is to protect.”

On Summer Sports…

If your kids participate in sports leagues over the summer, don’t forget the most important part of the game: the team snack. Don’t forget to communicate with coaches about your child’s food allergy, especially, as Sarah points out, if you drop the child off for practice and don’t stay to watch. Kelly cautions NEVER to forget to pack the EpiPen in sports bags (and let coaches know it’s there). Susan points out that some coaches require the removal of all jewelry, including medical alert bracelets, during play. This makes it especially important that the coach knows your child and her allergies. When you sign your kids up for sports, there may be an area on the form that asks about food allergies and medical issues. Ask if this information makes it onto the roster so the coach sees it regularly.

On Sending them Off to School (or College)…

Even the most blissful summer eventually comes to an end, followed by … school. (Insert collective sigh here.) For the little ones, get a 504 Plan. Ideally, your child should be able to self-carry her epinephrine and staff who deal with her, including bus drivers, should know how to administer it. In some ways, sending a student off to college is even more scary than sending a five year old to kindergarten. By this age, your child should know how to talk to others about his allergy in order to protect himself. All-you-can-eat dining hall buffets can be a nightmare for those with food allergies (not to mention dining tables with lots of food spillage), so talk to college administration with your child to see what measures are in place to protect those with food allergies, and see if your child can have living arrangements where he can (safely) prepare his own food.

In the end, as Lori says, we have one goal for our food-allergic and non-allergic children alike: “to make sure their physical, emotional, and social needs are met so they can focus on going about the business of being regular kids.” By helping each other through challenges in the summer – and all year round – we can do just that.

Managing Food Allergy Anxieties

June 5, 2012 by The Motherhood

If you and your kids don’t have food allergies, you probably didn’t think twice about the peanut butter you slathered onto your PB&J sandwich the other day, or the milk you poured over your cereal this morning. But for some families, such foods can be a much more serious matter.

Today in The Motherhood, Lori Sandler of Divvies was joined by psychologist Dr. Jules Spotts and a panel of food allergy-aware co-hosts to discuss how we can manage our own (and our children’s) anxieties around their food allergies.

Start Early

From an early age, you can teach kids to be vigilant about food allergies – but allergies do not need to define them or consume their life. “We have taught our son, Benjamin, that having food allergies is one piece of the puzzle of self, and the puzzle of your family. Our children are regular people, who happen to have food allergies,” said Lori Sandler of Divvies.

“Here are some things that have helped me as a parent,” added Jenny of Nut-Free Mom. “Teach your child to be confident. Praise all the wonderful things about them. They are not just the sum of their allergies even though we sometimes have to discuss allergies more than we would like (in restaurants, etc.) Try to find fun non-food activities that you do regularly as a family. Food is part of the social fabric but it doesn’t have to be the main focus to have a good time.”

Take Reasonable Precautions

Especially when your kids are young, the idea of going to a restaurant or picking up a snack on the go can be terrifying. “The anxiety is natural and it will pass as your children get older and you become more comfortable dealing with the food allergies,” said Carmen of Mom to the Screaming Masses. In the meantime, Lori Sandler suggested packing snacks and speaking with restaurants ahead of time to make accommodations for kids with food allergies.

When your child is old enough to attend school, that can present another challenge. Psychologist Dr. Jules Spotts recommends patience in dealing with school administration as you work with them to ensure your child’s safety. “Stay even in your approach to the school, while you communicate the need to have a safe environment for him, and also one that does not isolate him from social contact and interfere with belongingness in the group,” he said. “Present yourself as quietly firm, decisive, and knowledgeable, and avoid a stance of argumentative leading to litigious.”

Read this comment thread for more ideas on helping kids deal with food allergies at school.

Don’t Let Food Allergies Isolate You

It’s easy to feel isolated by food allergies, especially when you’re afraid to eat outside of the home. To help avoid those feelings, “Get to know some local places, their owners, and build established trust relationships regarding your daughter and her food needs. Also, do your best to build a network of friends where everyone feels safe in participating in food related activities,” said Dr. Spotts.

Eleanor of Food Allergy Initiative and Mamaleibo recommended Chipotle as an allergy-friendly chain Mexican restaurant, with no nuts, fish or eggs. They also offer corn shells for people with gluten intolerance. Chris S. added, “I love how Jamba Juice will not only make my son’s smoothie in a clean, dairy free blender but also that ‘Dairy Allergy’ is clearly marked on the orders they pass on and on my receipt.”

“You also may want to check out www.allergyeats.com – a website that allows food allergy families to post their ratings of restaurants around the country. They have a mobile app too!” said Barbara of Food Allergy Initiative.

For more strategies on eating out safely, you can check Sloane Miller’s blog, Allergic Girl, or her book of the same name. And for more advice on avoiding feelings of isolation related to food allergies, read the comment thread here.

Help Educate About Food Allergies

For kids who are adjusting to food allergies, “FAAN [The Food Allergy and Anaphylaxis Network] has teen support groups, I believe, and conferences for kids,” said Emily of West of the Loop.

Some of the most difficult interactions can take place within your own family, when relatives don’t accept the reality and danger of food allergies. “All you can do is provide as much information to educate them on it. And sadly, if they still choose to not follow the rules, then you simply can’t allow them to have unsupervised contact with a child who has food allergies,” said Christina of A Mommy Story. “At least until the child is old enough to understand allergies enough to say no to them.” For more thoughts on this issue, read the comment threads here or here.

You can also “try sharing this post with them. I am a pediatric allergist and have children with food allergies,” said Sarah of The Allergist Mom. “This post seemed to help many families in your situation. There is actual known science behind allergic reactions.”

The bottom line is, “eventually you will need to learn to trust others – at some point you just won’t be able to do it all by yourself. The trick is to figure out who you CAN trust, make sure they have the right information, and always have an emergency plan (meds, etc.),” said Colette Martin.

Find Recovery Options

After experiencing an incident like anaphylaxis, both kids and parents can experience fears around food moving forward. Dr. Spotts acknowledged that getting over such fears “will take some time,” but “as your [child] logs in more successful experiences of checking out labels and having nothing happen, their confidence will build.” Dr. Spotts also recommended “seeing a therapist for the PTSD” if necessary, “thus empowering him and yourselves by actively addressing the allergy and the associated anxiety.”

Chris S. shared a series of photos she took in the hospital after her son suffered anaphylaxis from accidentally ingesting a bit of cheese. Sarah of The Allergist Mom agreed with Chris S. that images are powerful: “Some of my most powerful lectures have included images of my children during allergic reactions. One person even told me that they didn’t really believe it until they saw it.”

Be Willing to Let Go of Anxiety

“I think as parents of kids with food allergies, we will always have anxiety…but all parents have anxiety. I have gone out of my comfort zone (after extensive means of making sure my child will be cared for/food allergies are understood) and I’ve been glad I did. For example, summer day camp is something we tried and it worked out,” said Jenny of Nut-Free Mom.