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Food Allergies: When Food Can Be Fatal
By Marnell Jameson

An outsider might think it odd that Stephanie Lewson brought her own pumpkin pie to Marie Callender's, a restaurant known for pies. Weirder still that she cut it into 1-inch squares and doled it out on toothpicks to the 15 women meeting at the restaurant in Lake Forest, California, last month. The women oohed and aahed over the pie's flavor and texture. As Lewson rattled off the ingredients -- Mocha Mix, flavorless gelatin, Tofutti cream cheese, egg replacer -- they grew more ecstatic. Finally, a pumpkin pie that wouldn't kill their children. They had to have the recipe.

All members of a food allergy support group in south Orange County, California, these women are mothers of children with fatal food allergies. They meet monthly to share recipes, Web sites and advice on getting their kids through the day alive, a tactical feat that gets more complicated during holiday seasons.

"While the word 'party' strikes joy in most hearts, it strikes terror in ours," said Leslie Lawicki, a Mission Viejo mom who was running the meeting, and whose 3-year-old son is deathly allergic to eggs milk and nuts.

The hardest part of the letting your child attend a party, said Lawicki, is controlling the environment. "Even if a hostess says the food will be safe, almost no one realizes all the hidden ingredients in foods." Nor do they grasp the severity. She recalled a well-meaning relative at Thanksgiving who, when Lawicki discovered the corn had been cooked in butter, said, "Oh, just rinse it off in the sink."

"They just don't get it," she said.

But as the number of children with food allergies increases along with support groups like this one, more people are getting it. Food allergies affect 5 percent of all children, according to Anne Munoz-Furlong, executive director of the Food Allergy Network, a non-profit organization based in Fairfax, Virginia, that provides support for food allergy families and promotes awareness.

Foods That Can Cause Problems

Six foods -- milk, eggs, peanuts, tree nuts (walnuts and pecans), soy and wheat -- cause 90 percent of all children's food allergies. Experts don't know why more children are developing severe food allergies, which are a type of immune disorder, but some suspect multiple allergy genes, early exposure to certain proteins and environmental factors. For many of these kids, the reaction is so severe that mere contact with the food triggers anaphylactic shock, a condition that brings on swelling, hives, breathing difficulty, heart irregularity, unconsciousness or even death.

Fortunately, most children outgrow their allergies, except for the nut allergies, which tend to be lifelong, said Munoz-Furlong. But getting these kids to puberty alive takes hyper-vigilant parenting.

"People don't realize this is not just an intolerance to the food but a fatal allergy," said Lauralyn Markle, of Laguna Niguel, California, whose 6-year-old daughter, Kelly, once flared into a serious reaction after kissing her dad on the cheek after he had eaten cereal with milk. "Just sitting at a table where someone had just eaten a peanut butter sandwich could be deadly."

Protecting by Avoiding

Avoidance is the only protection -- but try explaining that to Sara or Johnny when they want to attend the school Christmas party or have milk and cookies with a friend.

And dinner at Grandma's? Forget it.

"Every time someone else cooks, in spite of the good intentions, you can count on a sick kid and a trip to the hospital," said Rhonda Hansen, of Rancho Santa Margarita, whose 10-year-old son is fatally allergic to milk and eggs. As a result, she -- like the other mothers in the group -- tries to host gatherings at her home. If these families do go to a relative's house for dinner, they bring their child麟 food pre-cooked.

"We've had to leave many parties, even from relatives' homes who say they get it and then put out bowls of peanuts," said Gay Rams, of Laguna Hills, whose 8-year-old daughter is fatally allergic to nuts and eggs. She learned of Ariella麟 condition when she gave her daughter peanut butter on a cracker at 11 months old and the child nearly died. The scary part was, she didn't eat the cracker, only touched it.

Recently the Ram family went to a relative's bat mitzvah, and although the hosts were aware of Ariella's condition they had placed peanut butter cups on every table.

"If just one relative had eaten one and then given Ariella a kiss, it could have been the kiss of death," said Rams.

"Your life becomes about packing up safe food," said Markle, a physician who almost never leaves the house without a meal in tow for Kelly, who's allergic to milk, eggs and peanuts. "We never let Kelly eat anything prepared by someone else. Even if a relative has used an allergen-free recipe, it only takes one cross-contamination with a utensil or dish to cause a severe reaction."

Foods' Hidden Threats

What outside cooks -- those not trained as these moms are -- don't understand are all the hidden threats. Milk, for example, masquerades as whey, casein and 33 other names on a list that mothers of dairy-allergy children know by heart. Eggs have 15 pseudonyms.

"Milk substitute and egg replacer are not staples in most pantries," said Lawicki. "You can never go to someone's house for dinner and just relax."

The only times these mothers do relax socially with their kids are during the two annual parties the support group hosts for the children. One party is held around Halloween, a particularly tough holiday on the kids, and the other in spring. The mothers plan the menu together to make sure all the kids can eat everything provided.

Besides monitoring these children's every bite and exposure, these moms are never without their medical bags, which contain Benadryl and Epi-pens, shots that act like adrenaline to help shut down allergic reactions. These medications can sometimes avert the reaction or, depending on how severe it is, buy time before emergency personnel can take more aggressive measures. These mothers also train teachers and caregivers to prevent and treat allergic reactions.

Parents' Vigilance Pays Off

It's tough to constantly remind people without constantly annoying them, said Lewson, of Huntington Beach, whose fatally allergic 3-year-old attends pre-school. Like similar support groups across the country, one of this group's main efforts is to promote awareness, which, members concede, is an uphill battle.

One of the nights Markle dreads most is back-to-school night, when she tells the other parents in Kelly's class about Kelly's allergies. A lot rides on teacher and parental cooperation because four out of six fatal food reactions in children occur at school. And while these moms don't expect perfect compliance, they hope that by explaining the situation and its seriousness, they can make a few more time-pressed moms and dads think twice before slapping a peanut butter and jelly sandwich together for their child's lunch.

"Most parents are great," said Markle, "but later you hear that someone complained because she couldn't make the class peanut butter cookies because of one kid."

Hansen heads these moms off at the pass by always bringing the food for class parties. "I make milk-and-egg-free cookies and cakes, and the kids don't even notice the difference." She rarely mentions the ingredient switch to the other parents because "if I tell people they turn up their nose."

Staying slightly ahead of each curve is a necessity for these moms, who want to give their children as normal a childhood as possible. Lawicki calls ahead of every party to find out the menu. If there will be a cake, she asks what flavor and what color frosting and whips up an equivalent. When her son was recently invited to a cookie- decorating party, Lawicki made him his own "safe" gingerbread men and frosting. And when they visit Santa, she brings a safe sucker and sneaks it to Santa when Jake's not looking. "If I don't plan ahead, a happy event could quickly trigger a tantrum."

As children get older and don't want their moms at their elbows, parents have to get even more creative. When Gabriel, Hansen's 10-year-old, goes caroling with his church group this season, then returns to the church for hot cocoa, Hansen will be ready. She'll slip into the kitchen with her own pan and spoon and make Gabriel his special cocoa. "I don't know what I'll do when he doesn't want me in the kitchen at every party."

For issues like that, the group helps tremendously, said Markle, who appreciates not just the recipes but the understanding from the other moms who go through what she goes through. Times like now when she's trying to book flight plans for her family's vacation, and the airline is reluctant to make the flight peanut free. Some airlines are peanut free for all flights, but getting those that aren't to substitute pretzels for peanuts on just one flight is a struggle, she said.

"They don't understand the reaction to those airborne particles that could happen when hundreds of people open peanut bags. And I don't want to find out at 30,000 feet up."

This story was originally published in the Los Angeles Times in December 1999.

Marnell Jameson is a Southern California journalist who writes for Woman's Day, Family Circle, Child, Fit Pregnancy, Apria.com, the Los Angeles Times and other publications.

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