Life StoryDec/Jan 2009 Issue

Your Child and Multiple Food Allergies

Anxiety. That’s the diagnosis my obstetrician gave me after I told him of my tight chest and racing heart. He chalked it up to stress, natural during the early weeks of pregnancy, he said.

But I knew the anxiety had little to do with my condition. It stemmed from something different—food allergies. In addition to the joy I felt about my second pregnancy, I was worried about my firstborn. Joseph, my 5-year-old son, is severely allergic to peanuts, tree nuts, wheat, milk, egg and soy. He also has asthma, an additional risk because his allergic reactions are more likely to include bronchospasm, a symptom that constricts air passages. Bronchospasm may not respond to antihistamines and may need quick treatment.

Would Joseph be safe when I was in the hospital giving birth? And would I be able to balance the care of two children with one so allergic?

A Surprise Diagnosis
About 3 million children in the United States (6 percent of kids under 3 years of age) have food allergies. How many are allergic to more than one food? There are no national statistics, according to the Food Allergy and Anaphylaxis Network (FAAN). Most food-allergic children are allergic to just one food. A minority have two food allergies. Having three or more food allergies is significantly less common, says allergist Vincent Firrincieli, MD, of Carolina Allergy and Asthma Consultants in Cary, North Carolina.

Joseph was diagnosed with multiple food allergies when he was 9 months old. My husband and I were shocked—no one on either side of our families is allergic to any food, let alone several.

Joseph’s allergies are more than just multiple—they are also severe. Many children with mild allergies might have a reaction, like a rash around the mouth, that lasts for several hours. But Joseph’s allergies can cause anaphylaxis, a rapid and potentially life-threatening response.

“Joseph is extremely allergic and would be one of the most allergic children in any allergist’s practice,” Firrincieli tells me. 

The diagnosis and its implications plunged my husband and me into a new and unfamiliar world. We knew our lives would never be the same. We decided to keep our son safe and happy, despite the stress-inducing fact that one bite of food could kill him. We determined that preparation, communication and education were essential in our everyday lives. We armed ourselves with information from our doctors, books and websites.

Expect the Unexpected
As the time for my delivery neared, I made preparations for Joseph’s safe care. I gave my sister a detailed list about medication and meals, including food choices for each meal and what utensils and other items were safe to use. Because she has always been his babysitter, she knew where the EpiPen Jr. and Benadryl are stored on each floor of the house. She has administered the asthma medication Joseph takes every night and she knows to only give him food that I’ve prepared.

But she has never had to cook for him —and I took extra steps to ensure that she wouldn’t have to. Because of his multiple allergies, Joseph doesn’t eat a lot of processed products. His diet consists primarily of whole foods, with plenty of fresh fruit and steamed fresh vegetables. His favorite meal is plain grilled chicken with broccoli and applesauce. I labeled all safe foods and dishes for him, froze meals and desserts, and stocked the kitchen with fresh produce.

This level of preparation is fairly typical of what I do every day when caring for Joseph and also when we travel. We rent a condo and vacation at the beach every year. We’ve turned a necessary chore into a fun tradition for Joseph. Before we unpack and settle into the condo, my husband and Joseph spend the afternoon mini-golfing while I thoroughly clean the place to make sure it’s safe for him.

Joseph decorates cookies that he can eat. No wheat, milk, eggs or nuts in this batch.

Every time we eat at a restaurant, a friend’s house or a family member’s home, I pack Joseph a lunchbox with his favorite meal, a safe brand of juice box, dessert, cutlery and a plastic placemat. At birthday parties, he is always ready with his own cupcake or slice of cake.

Since Joseph’s diagnosis, I’ve added creativity to my love for cooking. Baking without milk, wheat and eggs took some getting used to but now is second nature for me. The baked goods we bring to social events taste good and match the treats he sees his friends eat. These goodies are the product of fun times we have together in the kitchen. He loves licking the batter just as much as I do and we enjoy cooking up new ways to satisfy his sweet tooth, whether we’re baking Christmas cookies or strawberry shortcake.

There is no whining from Joseph about what he can’t have. He looks at things in a positive light. For example, when he sees another child eating a tasty-looking cupcake, he asks me, “Can we make my own kind of cupcake like that?” And we do.

Other Changes
Soon after Joseph was diagnosed, my husband and I joined two organizations: the Food Allergy and Anaphylaxis Network (FAAN), a national group located in Fairfax, Virginia, and NC FACES (Food Allergic Children Excelling Safely), a local support group in the Research Triangle Park area of North Carolina. Both groups have provided valuable information and offered life-enhancing opportunities.

Thanks to NC FACES, Joseph has been able to enjoy several safe events. The group has arranged peanut-free movie showings and a peanut-free section at the local Durham Bulls minor league baseball games, as well as food-free Easter egg hunts and Halloween parties.

“We know we’ve helped a lot of kids have fun with less stress for their parents,” says Andria Youngberg, one of the group’s founders and coordinators.

Joseph’s allergies also led us into the world of homeschooling—a path I didn’t expect to take but one that has worked for our family. 

A few years ago, I was sitting with my son when I noticed he was moving his tongue in a funny way before he started crying and vomiting, signaling an allergic reaction. I administered the EpiPen Jr., yet his oxygen level remained low enough to warrant an overnight stay at the hospital.

It turns out he had accidentally taken a tiny sip of milk. What if that sip had occurred in a busy classroom with no one alert to the reason for his tears? The incident is what convinced me to homeschool. The decision, initially made because of allergies, is one I continue to make because it is rewarding. Every morning, I am privileged to watch Joseph learn and flourish.

In addition to homeschooling, my husband and I have diligently educated Joseph about his allergies. We cover the safety basics – he knows what he is allergic to and he never leaves the house without wearing his MedicAlert bracelet or carrying his medicine pack (it contains two EpiPen Jr.s, Benadryl and an inhaler). In addition, he knows never to accept food from anyone. He says, “No thank you,” and politely explains that he is allergic so that people won’t continue to press him. They are trying to be nice but they need to understand that the peanut butter candy they put in my son’s face could kill him. 

A New Beginning
Thorough preparation and my sister’s reliable care meant that I checked into the hospital feeling reassured. Turns out Joseph had a fun and safe time with his aunt.

With baby Pamela’s homecoming, Joseph is enjoying being the big brother. As we settle in with the new baby, I’m glad I didn’t allow my anxiety about Joseph’s allergies to get in the way of the joy our new family brings.

“Food allergies are a challenge,” says Firrincieli, “But with knowledge and preparation, they should not adversely impact your child’s ability to have a safe and happy childhood.” It’s nice to have things in perspective.

Food Allergy Awareness
Raising a child with severe multiple food allergies is challenging. Here are some tips that can help.

Know the Enemy. Parents should be knowledgeable and proactive about their child’s food allergies. “It is important to know the foods that often contain the specific items to which your child is allergic,” says Firrincieli. And there’s more to watch than just food. For instance, egg is used as an ingredient in some vaccines. Wheat can be found in some hair and skin products and in craft supplies. Work closely with your child’s doctor and a knowledgeable nutritionist to get the information you need to keep your child safe and well nourished.

Read Labels. Reading and understanding food labels is a must, particularly when trying a new product. If you’re not sure of an ingredient, don’t feed the product to your child. Cross contamination is another concern. Look for products that are produced in a dedicated facility. Contact the manufacturer directly with questions.

Prepare, Prepare, Prepare. Make careful provisions when traveling or when family members or friends are taking care of your child. This means packing safe foods and drinks for your child, carrying a bag of emergency medical supplies, bringing alternative foods to parties, etc.

Educate and Inform. Not everyone will understand the very real medical risk of your child’s allergies. Be alert to the people in your child’s life who do not take his condition seriously so you’re prepared to step in, if necessary. Make certain that everyone caring for your child, including daycare workers, school staff and family members, understands what your child cannot eat and what steps should be taken to provide a safe environment. They should also be given a clear action plan in case an allergic reaction occurs.

Use the Internet. Your computer contains a wealth of helpful resources. Organizations like FAAN (www.foodallergy.org), the Food Allergy Initiative (www.foodallergyinitiative.org) and the Food Allergy Project (www.foodallergyproject.org) provide a wide range of useful information. Online allergen-free grocers, like www.orgran.com, www.aricofoods.com, wwwbobsredmill.com and www.enjoylifefoods.com, offer baking mixes, ingredient substitutes and other products.

Get Support. You’re not alone but it’s easy to feel that way unless you join a support group—or form one. Starting a group can be as simple as a bunch of moms meeting for regular play dates. That's how NC FACES (Food Allergic Children Excelling Safely) began in 2003. It is now 200-families strong. For a listing of groups registered with FAAN, go to www.foodallergy.org.

Watch Your Attitude. Stay positive and open to different ways of thinking. Focus on what your child can do, not on deprivation. Food allergies can be scary but it’s important to empower your child so he doesn’t let fear of a reaction rule his life. Instill a healthy respect for the allergies while making certain your youngster enjoys normal activities. Make it fun. For instance, trying new ingredients can be an adventure and can help inspire creativity. LW

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