Peanut Parent’s Unite: Support Group Offers Help for Those Dealing with Children’s Allergies

Ali Wicks-Lim of Amherst thought she was being overly cautious by not allowing her almost-2-year-old son, Mason, to try peanut butter. Doctors generally warn against giving it to a child before age 2 to guard against possible choking, but all of her friends smeared peanut butter on their young children’s sandwiches without worry. Mason had eaten almond butter before, and that had been fine. A small taste couldn’t hurt the little guy, could it?

But late last year, when Wicks-Lim handed her child a spoon of peanut butter while she was making sandwiches, her previous caution proved wise for an unexpected reason: Wicks-Lim turned around to see Mason’s face and mouth covered in hives. After a quick dose of Benadryl and a frantic dash to the doctor, Mason was diagnosed with a peanut allergy.

Mason’s reaction had been a relatively mild one, but his sensitivity was clear. “Anywhere he’d come into contact with the peanut butter at all was affected,” said Wicks-Lim. “Even the side of his cheek had a streak of hives where his [juice-box] straw had touched his face… because he’d taken a sip while he’d been eating.”

After a consultation with Dr. Jonathan Bayuk, Wicks-Lim learned the seriousness of Mason’s condition. Any food with peanuts – or any contact with so much as a trace of peanut protein – could put his life at risk.

“At first we were just so overwhelmed. It seemed like everything has peanuts, or there’s the chance it’s been made near peanuts,” said Wicks-Lim, sitting at her kitchen table, as she helped Mason eat a mango-flavored Popsicle. “It just seemed easier to stay home most of the time,” she said with a sigh.

Danger everywhere

The actual number of people who suffer from peanut allergy is unknown, according to the American Academy of Allergy Asthma and Immunology, which is based in Milwaukee, Wis., but up to 8 percent of children in the United States have some sort of food allergy. It is estimated that about 1 percent of those children are allergic to peanuts. According to the AAAAI, 50 to 100 allergic people die from exposure to peanuts each year, and about 30,000 seek emergency room treatment. In addition, diagnoses of peanut allergies more than doubled between 1997 and 2002, and its prevalence among children continues to increase by .5 to 1 percent each year, according to one allergy study in the United Kingdom.

While not the most common food allergy – milk and eggs hold that distinction – peanuts claim 30 proteins in their complex chemical makeup, and they can cause a wide range of reactions, depending upon which particular protein the body rejects. According to the Food Allergy and Anaphylaxis Network (FAAN), based in Fairfax, Va., the smallest trace of peanut can mean anything from minor eczema or skin irritation, to immediate shock and death for those allergic to peanuts. The most sensitive individuals react to even airborne peanut proteins, such as the inhalation of microscopic dust from crushed peanut shells’ or a small whiff from a bag of the popular airplane snack.

For parents of peanut-sensitive children, fear is compounded by the fact that the nut is ubiquitous. The average American consumes more than 6 pounds of peanuts in a year and peanuts, according to the American Peanut Council of Alexandria, Va., provide an estimated 12 percent of the daily-recommended value of protein. Public schools receive subsidized peanut butter from the government, and the nut-like legumes are staples of baseball games, circuses and playgrounds.

For children with the allergy, however, even the slightest exposure could trigger a reaction as serious as severe anaphylactic shock – a sudden reaction that can simultaneously affect skin, heart, digestion and breathing – or even death. All allergy sufferers are advised to carry an emergency source of epinephrine, a hormone that rapidly boosts the supply of oxygen and glucose to the brain and muscles so the body can effectively fight dangerous reactions. The portable form is known as EpiPen® and an injection to the leg is the commonly prescribed treatment for an allergic reaction.

While studies examining the causes of the allergy’s gradual increase are inconclusive, Bayuk, a board-certified allergist and clinical immunologist, attributes it in part to the widely agreed upon “hygiene hypothesis.” That hypothesis, he says, suggests that because young children’s bodies are exposed to few life-threatening bodily invaders these days, the immune system attacks foreign substances that it thinks might be harmful. “When it has nothing serious to attack,” mostly thanks to our increasingly antibacterial, near-sterile society, “bodies can react to certain foods, or other things it perceives to be harmful, but actually aren’t,” says Bayuk. Why certain individuals develop these extreme sensitivities is unknown.

Bayuk offers support for this hypothesis: In lesser-developed countries, he points out, babies have to face parasitic infections and serious challenges to the immune system. With the body busy fighting off deadly threats, it doesn’t attack substances that it identifies as less dangerous. Thus underdeveloped nations show very few – in fact, almost zero – cases of allergies.

Sharing, venting

The peanut allergy is a nightmare to most “peanut parents,” as they refer to one another. In their case, Ali Wicks-Lim and her partner, Jeannette, quickly found themselves in Bayuk’s office asking frazzled questions.

To address such anxiety, Bayuk, who has seen his share of frenzied parents and allergy sufferers, formed an open support group two years ago. The group now consists of about 40 families, mostly referred directly from Bayuk’s practice. Although 80 to 85 percent of those in the group have peanut-allergic children, common items such as milk, egg and wheat also rank among the foods members find troublesome.

The group meets periodically in Bayuk’s office to discuss both the challenges of dealing with an allergy and friendly resources in the Pioneer Valley area, such as which restaurants are helpful, and which children’s venues are safe and responsive to their worries. In addition to the meetings, Bayuk set up an online listserv so parents can email each other with questions and suggestions.

“Just learning what questions to ask has been the most helpful thing,” said Wicks-Lim, who joined the group right after Mason was diagnosed. “But,” she added, “it’s also helped me feel empowered to call a place and ask questions, to see if they’ll accommodate us or if it’s a place we just have to avoid.”

In addition to providing helpful information, the group also offers an environment for parents to vent their frustrations. Group member Valerie Vignaux of Leeds, whose son Griffin’s egg allergy emerged with a bite of his first birthday cake, confided her worries about the day her son enters school. “I really don’t want him to be overly nervous or afraid … you don’t want your kid to be labeled, or for the allergy to become his identity,” she said. “It’s like admitting your child is disabled, and in a way, it’s like he is.” Besides the egg sensitivity, Griffin also has allergies to a number of other foods, including peanuts.

Patricia Taylor-Tarbox of Hadley, another “peanut parent,” added, “It’s a tough line to walk. How much fear is necessary and how much fear is just too much…Food is such a huge part of our culture, they need to learn to be aware all the time.”

Taylor-Tarbox and Vignaux note that while children are still young, awareness and worry fall to the parents. They bemoan the fact that some restaurants are unable or unwilling to accommodate their children’s needs, and they express frustration that many people are annoyed by their questions about ingredients and cross-contamination. As a result, going out to dinner becomes a challenge rarely worth undertaking, they agree. Popular summer spaces like playgrounds, parks and festivals are comparable to minefields for a peanut-allergic child.

Making progress

At first, it seems like the peanut allergy affects everything you do, says Wicks-Lim. “It’s heartbreaking to say ‘no’ so often [to foods and certain activities], and you can’t fully explain to them what’s at stake,” she said. “You end up in all these situations where you really just have to do your homework. But to say, ‘I’m sorry but none of these cookies in this whole store are safe for you’ is really hard.”

Her son, however, seems to grasp the importance of the issue. While he can barely talk, the wide-eyed toddler asked “Does this have nuts?” when offered a snack, and knows that certain foods are not “healthy for my body.”

Such early preparation is necessary for the time when the children enter school. Taylor-Tarbox – whose son Jack is 5 – advocated through the superintendent for her son’s pre-kindergarten classroom at Hadley Elementary School to be nut-free. “The cafeteria is for everybody; I can be more flexible when that is concerned. But I feel like he should be entitled to a safe education … the classroom should be a haven.” Last year, Jack enjoyed an allergy-free class space, and his school worked with Taylor-Tarbox to come up with an Allergy Action Plan for him. The plan requires that Jack’s teacher, the school nurse and other faculty who regularly come into contact with the youngster all understand the steps to be taken if he experiences an allergic reaction. It also calls for his teacher to keep Jack’s EpiPen® near the boy at all times, and for her to stay close to him on the playground in case something happens. “They’ve been really wonderful,” Taylor-Tarbox said. “We’ve been lucky.”

One doctor’s efforts

While parents struggle to cope with the effects, there is little they can do to prevent the onset of a food allergy. However, in addition to blaming the cleanliness of our society, doctors have also theorized that a woman’s consumption of peanuts during pregnancy or breast-feeding may lead to an allergy in her child. As a mini-experiment, Bayuk put Vignaux, who just gave birth to her second son, on a nut-free diet throughout her pregnancy in the hope it will decrease the new baby’s chances of developing a peanut sensitivity.

Bayuk says he plans to begin work soon on setting up a nonprofit organization to educate parents and increase available information – whatever it takes to help normalize the lives of the allergy-stricken and their families. But until then, parents can take comfort in other families’ stories and experiences through his support group and from his encouragement.

At one recent meeting, he told group members that at least 20 percent of children eventually overcome their allergies, due to “the grace of luck.”

“I had someone clear [the allergy test] this morning,” he said.

“So they’re done, they’re free of the allergy completely?” asked one parent. “Yep, they’re completely fine,” responded Bayuk.

Though Wicks-Lim and the others find that an enviable circumstance, for now, they say, they’d be happy with increased public awareness that might make life easier for them and their children. Said Wicks-Lim, “I just hope that other parents and families realize the seriousness of these issues and the struggles of families that have to deal with this.”