Imagine there's a time bomb attached to your child, one that could go off at any time and cause him or her life-threatening harm. That kind of knowledge would change the way your family lives and be a cause of constant stress. That's what life is like for Warren and Sari Alperstein since they discovered their oldest son, Ryan, has food allergies. Ryan, now 7, is allergic to milk and was allergic to eggs, but it is his severe allergy to peanuts and tree nuts that is deadly.
"Without being obsessive about it, this becomes your life, because one mistake could be fatal to your child," says Warren.
Ryan is not alone. More than 12 million Americans—one in 25 persons—have food allergies. According to the Food Allergy and Anaphylaxis Network (FAAN), the incidence of food allergies is on the rise, having doubled in the U.S. over the last 10 years. Between 1997 and 2002, the incidence of peanut allergy alone doubled in children. Yet little is known about why food allergies are increasing, and parents still struggle to get their children accurately diagnosed.
When Ryan was an infant, he suffered with eczema that was so severe he scratched himself until he bled. In his first year of life, each time his parents introduced a new food into his diet, he experienced diarrhea and vomiting. The family pediatrician at the time chalked the eczema up to a dermatological problem, although the Alpersteins suspected something more was transpiring. When Ryan became extremely ill after drinking regular milk around age 1, his family sought a second opinion from a new pediatrician and were referred to a specialist who diagnosed their son's allergies.
"I'll never forget this," says Warren Alperstein. "The doctor said, 'If your son were to ingest any type of peanut, whether it's a particle or more direct through food, he will have an immediate and severe reaction that, left untreated, could be fatal.' We were in shock. We could have easily poisoned our child."
"The lesson that's important is that you need to be your child's advocate," he continues. "We easily could have gone along and only learned he had a peanut allergy when he was exposed to it."
Like the families of the estimated three million children in the U.S. who have food allergies, the Alpersteins set about changing their life to accomodate Ryan's allergies. They and their two younger sons consume no nuts whatsoever, inside or outside the house, as even touching Ryan after touching peanuts could cause a contact reaction. There are milk products in the house, but Ryan has a shelf of "safe foods" he knows belong to him. The family switched from peanut butter to soy nut butter. Sari Alperstein packs "safe snacks" for him when he goes to birthday parties and play dates, and he can eat with his class in the school lunch room, but at the allergy table. (His preschools were peanut free.) When grocery shopping, they read the labels on all foods, every time, as companies can change their recipes and manufacturing processes. When the family travels, they alert the airline in advance to make theirs a peanut-free flight.
The rising incidence of allergies has made everyone, from bus drivers to chefs, more knowledgeable about the problem. "Schools and camps are becoming aware that more and more children have allergies and that they need to accommodate them safely," says Sari Alperstein. Still, she says, "I have come across parents who get offended when their child can't bring peanut butter to school. There are parents who just don't understand that your child could die from having peanut butter in the classroom. I try to educate and talk with them, to let them know this is a life-threatening food allergy and that this is something I do to make Ryan safe and I would do the same if it were their child."
Having grown up with the allergy, the Alpersteins say Ryan is good-natured about getting a popsicle when the other kids are having birthday cake, for example. It's his way of life. But the stress is constant for his parents. They carry two Epipens (epinephrine) at all times, as well as Benadryl, as seconds could make a difference of life or death if Ryan were to go into anaphylaxis, a severe allergic reaction responsible for most allergy-related deaths and 30,000 ER visits a year. Innocuous family events, like attending an O's game, require advance planning. Sari always brings baby wipes to clean the seats and often the family moves seats (or asks others to do so) if they are consuming peanuts near Ryan in the stadium.
"It's extremely stressful when it comes to starting camp, for example, or starting the school year, because there's food all around you," says Sari. "Going out to a restaurant is complicated because you need to meet with the chef to go over what foods are safe for Ryan to eat, and what type of oil they use. There are only a few restaurants we feel safe taking Ryan to."
Even as more families contend with severe food allergies, researchers struggle to understand why the incidence is rising and the manifestation is becoming more severe and deadly.
"There are a number of theories that have evidence to support them, but it's very clear that none are close to telling the complete story," says Dr. Robert Wood, director of pediatric allergy and immunology at the Johns Hopkins Children's Center and the author of Food Allergies for Dummies. Dr. Wood diagnosed Ryan Alperstein's allergies and is a peanut-allergy sufferer himself.
"The theory that has gained the most attention and that does have evidence to support it is the hygiene theory," he continues. "That probably is the biggest reason why food allergy has increased much more in the developed world than the under-developed world."
The hygiene theory postulates that the less the immune system is exposed to infectious agents and bacteria early in life, the more likely it is that the body will busy itself developing allergies. All allergies, food allergies included, are rising throughout Europe, Japan, Canada, and Australia, as well as in the U.S. The more developed a country becomes, the higher the incidence of allergy. While the hygiene hypothesis explains why there is less incidence of allergy in developing countries where a young immune system is constantly toughened-up by bacteria and infectious agents, it does not explain why, for instance, children in inner-city environments—where immune systems face more pollution and germs—have the highest rates of allergic disease anywhere in the United States.
Clearly, there's more to the rise of allergies than simple hygiene. Other theories contend that pregnant women exposed to extreme stress (gun violence or severe poverty, for example) are more likely to have a child with allergies. Others theorize that environmental allergens, air pollution, nutrition, or processed food could be to blame. While immunizations and antibiotics are being considered as well, there is no research to support that they contribute to allergies yet.
"There's not a single explanation or phenomenon for rising allergies," says Wood. "There will likely be multiple factors."
Previously, physicians offered lists of recommendations to parents that might have helped mitigate the onset of allergies, advice such as keeping milk out of the diet until age 1, egg until age 2, and peanuts until age 3. Not so anymore, as research indicates that we have less command over allergies than once assumed. Wood explains that the newest physician statement issued this year by the American Academy of Pediatrics states only that parents should try to breast feed for at least four months, not start solid foods for four months, and, if breast feeding isn't possible and it's a high-allergy-risk family, use a low-allergy formula.
"Allergy is really something we think is already programmed into the immune system," says Wood, "not something we have that much control over."
For parents (or parents-to-be), there seems to be little good news. There's little to look for to help diagnose a child with allergies except eczema, which is often an indicator. And children are outgrowing allergies at a slower rate than in previous generations—or not at all—indicating that the type of allergies occurring today have more staying power than their predecessors. Studies from the 70's and 80's showed that 75 percent of children outgrew their milk/egg allergy by age 3; current studies show only 20 percent outgrowing it by age 5 with another 20 percent carrying it into adulthood, which was once rare.
According to Wood, there are reasons to be hopeful. Research is being conducted into the origin of food allergies, genetic aspects of food allergies, and ways to treat them. While he predicts it could be 10 or 20 years, "We're very optimistic we'll be able to treat food allergy. It appears from studies we've done so far that this is a treatable condition, treatable in a way that it won't just make it less risky but that it will make it possible to truly eat what you are allergic to."
Studies show that having a child with food allergies has as great an impact on quality of life as juvenile diabetes or juvenile rheumatoid arthritis. The difference is control. A family can do everything right and it only takes one harmless accident to cause a death. The Alpersteins recommend that parents of a newly diagnosed child join FAAN, for support as well as for recipes and tips on traveling with an allergic child, and get as much information as possible from other parents, allergists, pediatricians, and books.
For parents, the scariest time is the teen years, which is when most food allergy fatalities occur. The risk of death is highest when medication such as epinephrine is not readily available, which requires a hyper-vigilance not typically associated with teenagers.
"When I think ahead to, for example, bar and bat mitzvahs, or going off to college and pledging a fraternity or sleep-away camp—could he even go to sleep-away camp? At this point, I don't think so," says Sari. "I try not to think so far ahead. I try to take it one year at a time."
Each year on his birthday, Ryan is tested to see whether his allergies have improved. As his risk numbers go down, he can eventually take a "food challenge," where the allergy food is introduced to him in a safe, hospital setting. In this way, the Alpersteins found that Ryan outgrew his egg allergy; his milk allergy is improving. But unlike other childhood food allergies, peanut allergy can become more voracious with age. It is unlikely he will ever outgrow it.
"While it absolutely changes your life and the life of the people who care for him, we keep it in perspective," says Warren, who says he and Sari frequently consider that they are lucky that their child's condition is manageable, unlike parents of terminally ill children. "Your child has a condition that needs to be monitored closely and the most important thing is to educate the people around him or her, educate the child, and do everything you can to let the child feel that he or she is not different."
BENEFIT EVENT: On Saturday, October 4, FAAN will host "Walk for Food Allergy: Moving Toward a Cure," in Ellicott City to raise money for education, advocacy, and awareness. For more information, visit foodallergywalk.org. For general food allergy resources, visit the main FAAN site at foodallergy.org.