Every parent of a food-allergic child has a story to tell.
Some recall the earliest days, when their baby slept fitfully between bouts of vomiting or suffered from a chronic rash. Others describe the panic of their child’s first serious reaction when facial swelling or labored breathing triggered a frantic visit to the emergency room. All share relief at having a diagnosis for these scary or mysterious symptoms and a determination to keep their child safe from further exposure.
Information, these parents know, is their child’s greatest source of protection. With pediatric food allergies on the rise, others may benefit from their stories and knowledge.
A food allergy is caused by an immune system response to some component of food – it's often a protein – that the body mistakes as harmful. This is different from food intolerance, in which the digestive system is unable to process some element in food.
Many children with food allergies have a family history of allergy, either food or environmental, but even a child with no family history has a 20 percent chance of developing allergies.
The Centers for Disease Control and Prevention documented an 18 percent increase in food and digestive allergies in children from 1997 to 2007, although the cause is not yet understood. In that light, parents who observe even one or two incidents of allergic response should pursue testing by a board-certified allergist, recommends Dr. Wesley Burks, chief of pediatric allergy and immunology at Duke University.
An allergic response could included any of the following symptoms: rash, hives or itchy skin, nausea, diarrhea or stomach pain, swelling of the face, lips or airway, shortness of breath, or anaphylaxis, a life-threatening systemic response.
Eight types of food are responsible for 90 percent of allergies: eggs, milk, soy, peanuts, tree nuts, wheat, fish and shellfish. However, “the other 10 percent can be almost anything,” says Dr. Vince Firrincieli, of Carolina Allergy and Asthma Consultants in Raleigh.
“In addition,” Firrincieli says, “it is now more common for children to be sensitized to two or even three different foods.”
The American Academy of Pediatrics recommends that children with a family history of allergy breastfeed and avoid solid foods until at least 4 months of age. Many doctors also recommend delaying the introduction of peanuts, tree nuts, fish and shellfish until age 3, even if there is no family history of allergy.
In the U.S., where many foods are processed alongside common allergens, managing a child’s allergy can be daunting.
“Living with severe food allergies requires an entire mindset geared toward providing a safe environment,” says Andria Youngberg of Cary, whose son, Tyler, 9, is allergic to peanuts, milk and eggs. “It becomes a part of everyday thinking.”
Most families must change the way they prepare meals. Janet Vande Berg of Durham says that when her daughter Caroline, now 8, was diagnosed with peanut allergy, she had to start cooking from scratch.
“That was hard for me,” Vande Berg says. “I had always been an ‘open-up-a-box’ kind of person.”
Janeen Green of Cary started double-duty food preparation when Courtney, now 6, was diagnosed with allergies that include dairy, wheat, peanuts and beef.
“Her sisters didn’t like any of Courtney’s foods,” Green says, “so I cooked two meals.”
Dining out can be complicated as well.
“We insist on seeing labels and ingredients. Sometimes, we ask for certain items to be cooked in a separate area,” says Johanne Laboy of Cary, whose children, Austin, 10, and Alexabelle, 5, are allergic to milk, eggs and nuts. “By the time we are done with all the requirements, eating out doesn’t feel like fun.”
Eating at school can be tricky, too, since even trace amounts of allergens in other students’ food can present a risk. Melinda King of Apex sends lunch and a clean place mat to school with her son Isaac, 7, who is allergic to milk and eggs and cannot eat wheat, nuts, corn, rice, soy or beef because of allergic inflammatory disease.
Nutrition is an additional concern. “Between food allergies and the often natural food ‘jags’ for toddlers and preschoolers, it is difficult to find foods to eat,” says Lesley Stanford, a registered dietitian and pediatric nutritionist at Duke.
Some parents note surprising results. King reports that, while Isaac eats the same thing for lunch nearly every day, he’s eating a lot of fruit and vegetables and home-baked breads.
“We eat healthier in general, because most meals are from scratch and the ingredients are less processed,” Youngberg says.
Food labeling requirements enacted in 2006 help parents prevent accidental ingestion, but shopping is still challenging.
“Over the years, I have become familiar with the products my children can consume,” Laboy says. “But I check the labels all the time.”
Many stores carry allergen-free alternatives, but they tend to be more expensive.
“The cost of feeding a food-allergic child is no doubt higher,” says Trish Gavankar of Apex, whose 6-year-old daughter Marysa’s allergies include milk, eggs, nuts and sesame. “[But] it comes home with you no matter what the price.”
The constant threat of an allergic reaction can also create stress that changes family dynamics and curtails their social lives. Handling these issues can be as difficult as managing the allergy itself.
“Quality of life is affected for a child with food allergies, and for the entire family,” Stanford says.
“Our children’s food allergies have had a deep emotional effect on us,” Laboy says. “Every day, we worry about our children being exposed to something that may be fatal. My parenting style is a lot different than it would be if my children didn’t have allergies.”
Other parents note that they feel overprotective and less likely to entrust their child’s care to someone else.
“I was extremely concerned about … what to do when [Courtney] was playing with other toddlers and how I would keep her safe in preschool or with sitters,” Green says.
Siblings are affected, too.
“All [three] of my children … receive our infinite love, but certain things are done differently because of Tyler’s food allergies,” Youngberg says. “We don’t go to the State Fair because of the peanuts. We may not get the hot chocolate on the Christmas train because Tyler can’t join us.”
King remembers leaving a Pokemon convention because Isaac was showing signs of allergic reaction. His brother, Oliver, “was so disappointed and angry, and my husband and I felt terrible afterward," she says.
The possibility of an allergic reaction can also impact friendships.
“We were holed up for about two years,” Vande Berg says. “I think some acquaintances stopped including us in social events because Caroline’s allergy was perceived as being so difficult.”
Green agrees, saying, “Sometimes I feel Courtney doesn’t get asked to play dates as much because parents are nervous about food.”
A support group can help with these challenges. N.C. FACES – Food Allergic Children Excelling Safely – provides “support, information and safe fun for the kids,” says Youngberg, a group coordinator. “It gives families an outlet to know that they are not alone… and that we can lean on each other.”
The group coordinates play dates and sponsors a peanut-free outing at the Durham Bulls’ ballpark.
“The threat of a life-threatening reaction is constant and can erode the core of a family,” says Gavankar, another N.C. FACES coordinator. “You have to find a way to put it in its place … that you can find a way to live a happy life and at the same time keep your child safe.”
“Parents need to have a high level of respect for allergic disease,” says Burks, the Duke pediatrics chief. “But it doesn’t have to control everything about their lives.”
Working with parents to protect children from life-threatening risk, experts in the medical field continue to study allergic disease in hopes of developing a cure. Burks’ ground-breaking work on immunotherapy at Duke’s Food Allergy Initiative offers what Firrincieli calls “hope on the horizon” for families with food-allergic children.
For now, however, he says, “The general approach continues to focus on diagnosis and avoidance.”
Firrincieli offers the following tips for parents of children with food allergies:
- Always read ingredients and steer clear of foods that “may contain” food allergens.
- Be careful about cross-contamination in the kitchen.
- Be wary of baked goods you have not made yourself.
- Inform the wait staff about your child’s allergy when dining out. If their answers aren’t reassuring, talk to the manager.
- Keep an Epi-Pen or Epi-Pen Jr. available in the event of a severe allergic reaction. Never travel or dine outside the home without one.
- Ask your doctor to help you develop a food allergy action plan for home and school.