It was only two months after Daniel Clowes started half-day kindergarten at a Pennsylvania public school, and already some parents of his classmates were grumbling about his family. Daniel, 6, has life-threatening allergies to several foods, including milk, eggs, sesame, tree nuts, and peanuts, so the school—at the urging of Daniel's allergist—declared the class nut-free and issued a safe-snack list. After the Halloween party, when Daniel's father, John, personally inspected the goody bags prepared by parents to make sure no unapproved foods had made their way in, school officials told Gina Clowes, Daniel's mom, that a few parents had complained. "Why is it," they reportedly asked, "that one set of parents gets to dictate what the rest of the class does?"
"A lot of people just don't get it. They think you're a freaky mom who has food issues," says Jaleh Teymourian-Brahms, a Millburn, NJ, mom whose 2-year-old son, Miles, is allergic to peanuts, tree nuts, and eggs. She recently got into an argument with the manager of her health club after dropping Miles off in the "nut-free" childcare room and discovering that another child was eating peanut M&M's--which the manager had given him. "I told the manager, 'That M&M could kill my kid.' He just rolled his eyes," says Teymourian-Brahms, who promptly quit the club.
Across the country, such clashes are occurring with striking regularity and rancor in schools, at daycare centers, and even within families as the number of children believed to have potentially deadly food allergies is exploding. "I've heard patients say, 'We can't go to our aunt's house because she doesn't understand,'" says Connie Weil, Ph.D., a psychologist at Children's Memorial Hospital in Chicago, who often treats allergic children and their parents. "It's a chronic illness, but it's a hidden illness, so it's misperceived by society."
Schools are declaring themselves nut-free, creating nut-free classes and lunch tables, or banning one childhood staple—peanut butter and jelly—altogether. Some enforce policies by inspecting lunch bags and asking parents to send in ingredient labels, prompting a backlash from those who see the measures as political correctness run amok or an overreaction by anxious parents.
Snarky comments about the "peanut police" pepper blogs and online message boards. "We are considering dressing our daughter on Halloween as 'The Death Peanut,'" one parent joked.
It's not unusual to hear about parents who have tried to sabotage food-allergy policies and children who have been teased or bullied by their nonallergic classmates. In fact, some parents of allergic children have filed civil rights complaints with the U.S. Department of Education (DOE), and in the last five years at least 14 of these cases against elementary and secondary schools have resulted in the department's issuing "resolution" letters that required a change in school policy, according to documents obtained by Child through a Freedom of Information Act request.
Saint Edward Elementary School, a Brockton, MA, private parochial school that receives federal funds and is associated with the Roman Catholic Archdiocese of Boston, refused to admit an extremely peanut-allergic student into kindergarten, according to the documents and local news coverage. As part of the settlement, the school agreed, without admitting any fault, to amend its policies and to reimburse the family for the extra tuition it had paid at another school.
Two nut-allergic children in the Union County, NC, public schools were found by the DOE to have been harassed in separate incidents at Antioch Elementary School and Sun Valley Middle School. Among the shocking findings investigators documented: a parent of a nonallergic child announced at a PTO meeting that he'd continue sending his child to the elementary school with peanut butter sandwiches and tell his child to "smear" the peanut butter along the hallway walls.
At the middle school, a teacher brought in a homemade casserole containing nuts and invited the allergic boy to eat it; when he said he couldn't because of his allergies, she had him stand outside the classroom (in the cold) while the other students ate. This child was also taunted and bullied by other students in the cafeteria, including one who refused to move from a peanut-free lunch table and ate a peanut butter sandwich—which resulted in the boy's suffering an extreme allergic reaction that landed him in the hospital, the documents show. The schools, while not admitting fault, agreed to change their food-allergy policies, according to the settlement documents. A spokeswoman for the schools told Child these were isolated incidents and that they try to do right by every student.
Fueling the discord are surprisingly large gaps in knowledge about food allergies, which is leading to mistrust and misunderstanding among parents and making living with this newly rampant childhood diagnosis a high-anxiety experience. How many children have food allergies? Are the numbers growing, and if so, why? How dangerous are these allergies? And what kinds of protections and policies are needed to keep children safe? None of these questions are easy to answer.
"This is a disease that hasn't been studied well. The science has to catch up," says Anne Munoz-Furlong, a leading authority and founder of the Food Allergy & Anaphylaxis Network (FAAN), a Fairfax, VA-based research and advocacy group.
The U.S. Food and Drug Administration estimates that about 5% of children have food allergies (primarily to milk, eggs, peanuts, and tree nuts). Experts consider the data "soft" because some studies use small samples and others rely on self-reports
A much-cited 2003 study by Mount Sinai School of Medicine in New York City and FAAN found that the number of children reporting peanut allergies had doubled between 1997 and 2002, from 1 in 250 to 1 in 125; the highest rate was for those 5 years old and under. The numbers, obtained through phone interviews, don't meet the gold standard of having been verified by medical tests. Still, studies that draw on reports from elementary schools and school nurses also suggest that the incidence of childhood food allergies is rising, as does a mountain of anecdotal evidence.
Reactions to food allergies can range from runny noses and rashes to anaphylactic shock, a severe reaction that can involve closing up of airways, a dramatic drop in blood pressure, and unconsciousness and can even lead to death. But diagnosing these allergies is surprisingly difficult. The blood and skin-prick tests that are widely used, for example, have false-positive rates as high as 50% (although negative test results are usually reliable).
Allergies to nuts—especially peanuts—get the most attention and cause the most fear because research shows that they're the most deadly and persistent. A 2001 study of 32 deaths over five years from food-induced anaphylaxis found that tree nuts and peanuts were responsible for 94% of the fatalities—with peanuts the culprit in 63% of the cases.
Only about 20% of children are believed to outgrow peanut allergies, while about 85% have historically outgrown egg and milk allergies by age 5, according to Scott Sicherer, M.D., an associate professor of pediatrics at Mount Sinai and author of Understanding and Managing Your Child's Food Allergies. (Robert Wood, M.D., director of the Division of Pediatric Allergy and Immunology at Johns Hopkins Children's Center in Baltimore, notes, however, that his new research is indicating that milk and egg allergies are growing more stubborn, with "no more than 50%" of children outgrowing them.)
It's the risk of death, of course, that can send parents into paroxysms of fear, and the statistics on that are soft too. Research suggests that 20,000 to 30,000 Americans a year land in emergency rooms from food-induced anaphylaxis, though experts say the actual number is probably higher. An estimated 150 to 200 people die each year from it, but that number is an extrapolation from a small study using data two decades old in which researchers examined the medical records of 1,255 people in a Minnesota county and found one anaphylaxis death. Mortality records at the Centers for Disease Control and Prevention (CDC) list anaphylactic shock from an adverse food reaction as a factor in 12 deaths in 2004, the latest year with available data. But the CDC says it's hard to know if those numbers reflect the true situation or are due to underreporting by doctors and hospitals.
Unless a child has already had an anaphylactic reaction to a food, the surest way to determine whether an allergy exists is to have what's called an oral challenge—in which the child is fed the suspected food under the supervision of a doctor. But this test sometimes is not given because of the fear of inducing a severe reaction. As a result, "some kids may be going through life thinking they'll keel over and die if they have a peanut, and it's not necessarily true," says Darshak Sanghavi, M.D., a University of Massachusetts Medical School assistant professor of pediatrics. In a column for The Boston Globe, he argued that the peanut allergy "epidemic" may be overblown. "There is a lot of fear-mongering and stoking of parents' anxieties," Dr. Sanghavi says.
In fact, the Canadian 15-year-old who was widely reported to have died after kissing a boy who'd eaten peanut butter ("Kiss of Death," screamed a People headline) had actually succumbed to an asthma attack that led to "cerebral anoxia," a lack of oxygen to the brain, according to the Quebec coroner's report. "One needs to put anxiety about childhood food allergies into context, as part of the culture of fear in parenting today," Dr. Sanghavi says. "If it wasn't peanuts that were feared, it would be something else."
Among many allergy researchers and medical practitioners, there's a recognition that some schools and parents are overreacting. There is some hysteria, acknowledges Dr. Wood, who, like many experts, calls the schoolwide bans of nuts unnecessary in upper elementary grades and beyond. Adds Dr. Weil: "I tell parents of allergic children they need to be realistically paranoid. There is a risk of being overprotective and over-circumscribing kids' lives."
Yet food-allergic children and their parents are wrestling with some terrifying unknowns: There's no cure for food allergies and no sure way to predict the severity of a child's allergic reaction on any given day. Doctors say the best defense is to have children strictly avoid the allergen and have epinephrine on hand to administer quickly in case of a reaction. "With a food allergy, the onus is on the family to be on guard. If you make a mistake, someone in your family could die," says Munoz-Furlong of FAAN. "That's a tall order for anyone."
Researchers have just begun to study the psychological fallout, but the evidence that allergic children and families are hurting is startling. According to a 2003 study conducted by the University of Southampton in England, peanut-allergic children feel more restricted and more stressed in their daily lives than those with insulin-dependent diabetes. A 2000 Canadian study reported that children with peanut allergies have a lower quality of life than even those with juvenile rheumatoid arthritis.
It's also not unusual for children to develop peculiar eating habits or anxieties after a severe allergic reaction, especially if it landed them in the emergency room, says Munoz-Furlong. Additionally, "if a parent has read a label and the child eats the food and has a reaction, it's not uncommon for the child to no longer trust the parent to know how to take care of him."
Sometimes parents fare no better. A new study of 120 parents of allergic children conducted by the University of Derby in England found that 36% had high levels of depression and anxiety—more than people just diagnosed with cancer. "It's hard to relax," says Gina Clowes, who runs an online support group at allergymoms.com. "Food is everywhere. You always have to be careful."
Allergic children and their parents not only check the label of every food consumed, but they're also careful about where they dine, calling restaurant chefs ahead of time to see how food is prepared and asking hostesses not to serve the allergic food in their homes. Many also say they keep close tabs on their children, limiting playdates at friends' houses (because they don't trust other parents to be vigilant enough) and always volunteering to be the class parent to make sure treats for school parties are safe.
"I follow my daughter around like a hawk," admits Beth Gorab, a Wayne, NJ, mom whose 6-year-old, Casey, is allergic to milk, beef, pork, and lamb. Like many moms interviewed, she says she accompanies Casey to all her friends' birthday parties—with a dose of epinephrine, a bag of safe snacks, and wipes to clean tables, kids' faces, and hands. Gorab is frequently the only parent in attendance.
Denise Bunning is a Lake Forest, IL, mother of two food-allergic sons, ages 13 and 10, who had anaphylactic reactions, and is the co-founder of a nonprofit advocacy group, the Food Allergy Project. She says she came to lunch at her sons' elementary school every day until each in turn felt comfortable looking out for himself--and told her outright to stop.
Last January a federal law went into effect requiring manufacturers to specify on labels any major allergen, like nuts or milk, a food contains. This was designed to prevent people with allergies from accidentally eating unsafe foods, but the reality is that accidents can happen even under parents' watchful eyes. Teymourian-Brahms's son Miles had an allergic reaction at age 16 months when he took one bite of a bagel that his mom, Jaleh, bought at a store. "I had asked if the bagels had any egg or nut products in them, and what kind of oil they used, and if they fried the bagel in something, was it fried with eggs? But the knife had been used to cut something else, and I forgot to ask them to wash the knife," she says.
A 1998 study by researchers at Mount Sinai and the University of Arkansas for Medical Sciences in Little Rock suggests that 55% of peanut-allergic children will suffer at least one reaction within a five-year period as a result of such accidental ingestions. Although the vast majority of reactions won't be life-threatening, the fact remains that any one of them could be. And a severe allergic reaction that goes untreated can swiftly kill a child. A 1992 study of 13 children who had severe food-allergic reactions found that receiving epinephrine within 30 minutes usually meant the difference between life and death.
Families of allergic children are sometimes stunned by the lack of understanding and sympathy from others. "Relatives that you thought would support you? Forget it," says Clowes. She says she had a "big fight and falling out" with some relatives after she and her family would not attend a large family celebration because it included "peanuts and potato chips fried in peanut oil. And the nearest doctor was going to be at least a half hour away," she says. "My husband and I discussed this, and we knew the stress would be too much."
Some marriages have been rocked by food allergies, too, as one parent sees the other as being too protective while that parent accuses the other of not being protective enough. "Someone should do a paper about the marital strife it causes," says Jane Benson, a Plymouth, MI, mother whose 16-year-old son, Paul, has peanut and tree nut allergies.
Socially, both allergic and nonallergic children are sometimes finding themselves in awkward and difficult predicaments. After St. Stephen's Preschool in Millburn, NJ, went nut-free in 2005, one parent sent his child to school with a "disguised" peanut butter sandwich, with peanut butter smeared only in the middle of the bread, according to Sheelagh C. Clarke, the preschool director. (Full disclosure: This writer had a child enrolled at the school at the time.) Aides found out after the child innocently announced that her father had told her not to tell anyone she was eating a peanut butter sandwich.
Bullying and teasing become issues especially for older kids, FAAN says. Two years ago, after peanut-free-zone signs went up in Paul Benson's high school, a student began calling Paul "Peanut Kid" and threatened to punch him. Then an editor at the school newspaper wrote an op-ed decrying the new policy and suggesting that allergic children should be home-schooled. "Paul felt like the whole school was against him," says Jane.
In fact, some parents say they don't like the idea of peanut-free lunch tables precisely because they think the arrangement can ostracize kids as they get older. Meanwhile, interviews suggest that a fear of severe inhalation and skin reactions is leading some schools and parents to isolate allergic children more than may be necessary.
Research shows that most allergic children probably wouldn't have severe reactions from air or skin contact with peanut butter, even though they might if they ate it. In a 2003 study led by Dr. Sicherer, 30 highly peanut-allergic children had a pea-size amount of peanut butter rubbed on their skin for a minute and sniffed peanut butter for 10 minutes; they also had the same tests with placebos. The result: not a single reaction that required any kind of treatment. A few of the children were red where rubbed. One had a reaction to the sniffed placebo—"probably a fear response," Dr. Sicherer says. The belief, he says, is that allergens are more likely to become airborne and cause reactions when food is powdery (bags of peanuts opened on a plane) or cooked (such as boiling milk or frying fish).
One reason some experts recommend nut-free classrooms for preschool and the early elementary grades is that young children often put their hands in their mouths. FAAN opposes schoolwide bans of any allergen, saying they can give a false sense of security because it's difficult to guarantee that no nut products make it into a school. There is no federal policy on what constitutes appropriate school responses, although a few states have developed voluntary guidelines. Doctors say parents of allergic children should ask their physician what makes sense for their child's age and allergic severity.
Meanwhile, allergic children and their parents continue to struggle to find a way to lead a safe life—without succumbing to fear. It's a daunting challenge, given the paucity of conclusive research and the awful reality that one mistake could mean death.
After Paul Benson had allergic reactions in middle school that seemed to arise just from sitting near a classmate who was eating a peanut candy bar, his school banned peanut products from large areas of the school. When he enrolled in driver's education in high school, participants were forbidden to eat nut products in the car or in the waiting room, and the bowl of treats for student drivers was removed, says his mom Jane.
Paul's doctor told him inhalation reactions were rare and offered to give him a sniff test; Paul declined. He eats lunch with one friend in the teacher's lounge and hasn't been to a movie in more than four years. "The last time we went was at 10:30 a.m. so it wasn't crowded, and he was fine," says Jane. "But he said it made him nervous to think someone behind him might be eating a Reese's cup."
Share your comments about kids' food allergies on our Park Bench message board!
Right now the only "treatment" for food allergies is to have young children scrupulously avoid what they're allergic to and always keep a dose of epinephrine (discovered around 1900) handy in case they begin to stop breathing. But some new avenues of research show real promise. Doctors say that within the next five years any one of these approaches could yield a breakthrough:
Injecting food allergens is dangerous, and there are no allergy shots for food allergies like those for hay fever. But trials of oral and sublingual (under-the-tongue) immunotherapy are getting some good results at Duke University School of Medicine in Durham, NC, and elsewhere. Young peanut-allergic children take a tiny amount of peanut powder (0.0003 of a peanut) to start, build up to a whole peanut, and then continue on a peanut a day. Some reactions occur, but by the time children reach a peanut a day their symptoms are largely gone.
Scientists at the Mount Sinai School of Medicine in New York City and other research centers are taking the DNA that makes up the protein in peanuts and altering it to make a new, hypoallergenic protein that could switch off allergic reactions. So far, it's only worked with peanuts and only in animals, but human trials could start within about a year.
Remedies based on those that have been used for centuries in China are being submitted for FDA approval and are shortly expected to go into human trials at Mount Sinai, with participants taking tablets that include ingredients from roots and fruits. Because of herbal medicine's success in China (and in animal trials here), researchers suspect the tablets will largely block allergic symptoms.
In this approach, already approved for adult asthma (as the medicine Xolair), scientists genetically engineer an antibody that disables a natural antibody, known as IgE, that triggers allergic reactions. Researchers hope to pursue an FDA-approved anti-IgE therapy for food allergies as well.—Jenn Andrlik
Scientists have many theories about why food allergy cases seem to be rising in the western world. One is that it might be due to better diagnosis—children with allergies today might have simply been labeled sickly or as having weak stomachs in the past. Some point to baby skincare products containing common food allergens or to mothers' eating peanut products and then passing them in breast milk.
Food preparation has also been blamed. The U.S. and industrialized nations tend to roast peanuts, although in China, which has a high consumption of nuts yet a lower rate of nut allergies, nuts are generally boiled or fried.
The most popular theory is the hygiene hypothesis, which suggests that as our environment has become more hygienic—people keep themselves and their homes cleaner and use antibiotics to fight infections and vaccinations to prevent illnesses—people's immune systems have begun to attack otherwise harmless proteins in food, causing allergic reactions, or in the air, causing asthma. Each theory has its holes and detractors, though. For instance, the hygiene hypothesis doesn't explain why children in inner-city communities, which have been documented as having poorer hygiene, have the highest rate of asthma in the U.S. As frustrating as the lack of certainty is for allergy sufferers and their parents, science doesn't have a clear answer just yet.—P.K.