“It had to have been the cake,” I said. “But I know they’ve tried dairy before.”
“Why does it have to have been the cake?” said Bob’s mother. “She tried a lot of things today. It could have been the punch.”
“Oh, I don’t think so,” I said, trying to choose my words carefully. “None of the fruits in the punch are common allergens.”
“It had mango in it,” she said.
“No it didn’t,” I said. I’d asked Kristen if it was safe, and she’d said it was. If it had had mango, I’d have been on the floor. (Later, she’d confirm: orange, pomegranate, ginger ale. No mango.) “Besides, it wasn’t so much her mouth. The hives were on her face, where she’d spread the frosting. Maybe the food dye?”
“I don’t know,” Bob’s mother said. “Jon had this reaction to shellfish once, and the hives showed up all over.”
“Yeah, but hives in the exact same shape as the frosting? I bet it’s the dye.”
I wanted to be right about the icing, but not for the sake of contradicting Bob’s mom. Not exclusively. Intolerance to Red Dye #40 seemed better than any of the alternatives of allergy to wheat, milk, or egg. But no matter what, a reaction of such intensity, with primarily topical exposure and at a young age, was a bad sign.
One hour, one IV, one round of Benadryl, one dose of steroids, and one pacifier later, Keira was almost back to normal. But her parents would soon learn that her version of normal includes an allergy to egg. This diagnosis would eventually broaden to include what their doctor called the “holy trifecta”—allergy, asthma, and eczema. Within a few months of changes in diet and nightly nebulizer treatments, their once often-fussy toddler had transformed into a happy, goofy little girl.
Given the statistics, I knew at least one of the children born to my friends was going to exhibit food allergies. I just wasn’t expecting to be on hand for the big debut. On the way home from the party, I had called my mother and rehashed the whole debacle, right down to the polka-dot déjà vu.
“I felt like, somehow, with all my experience, I should have been able to do something,” I told her. “There was nothing I could do.”
“It’s an awful feeling,” my mother said. “I know.”
At least Keira has come into a world where allergic reactions are recognized within minutes. I try to imagine what it must have been like for my mother, not knowing why I refused her breast, each bottle of milk and then Similac making me sicker. There is no bond that comes easier to mother and child than the act of cradling and feeding, except when what you’re feeding your child is actually killing her.
In the weeks after Keira’s birthday party, I found myself wondering what would happen when it was my turn. My mother had been unable to get me or my sister to breast-feed for any length of time. Could I convince my child to breast-feed? While there’s plenty of anecdotal evidence that the predisposition toward food allergies is inherited, there’s no model for specific allergies being passed down a family line. Odds are that my children will not share my allergy to cow’s milk. If I can’t breast-feed, how do I handle a bottle filled with something that could put me into anaphylactic shock? Every round of spit-up, every spill, is a recipe for disaster.
Later, when my children advance to solid foods, a whole other set of questions will come to the table. Do I limit my kids to my diet, for the sake of a safer household? How do I prepare them for the inevitable days when they make me sick? “Don’t touch Mommy until you’ve washed up”: that’s got to be the prescription for a high-strung child.
One of my favorite movies is Steel Magnolias. It came out when I was nine, and I’ve probably seen it two dozen times, if not more. Part of my love is fueled by its strange caricatures of Southern culture: Drum hacking the ass off the armadillo groom’s cake to reveal its bloodred interior, or Annelle solemnly informing Dolly Parton’s character, “Miss Truvy, I promise that my personal tragedy will not interfere with my ability to do good hair.”
There’s also one scene that haunts me. Shelby, the character with diabetes played by Julia Roberts, collapses on her front porch while alone and caring for her young son, Jackson Jr. She goes to call for help and crumples again. Her husband comes home to find his son wailing, the spaghetti boiling over on the stove, and his wife sprawled on the steps, unconscious, her hand still clutching the phone receiver.
The scene is sentimental Oscar bait, I know. In the real world, tragedy can strike anyone, anytime—aneurysms, strokes—I know. But now, in my thirties, watching those around me begin their families and dreaming of my own, I realize that it’s one thing for me to play the odds of this allergic life. It’s another to bet the welfare of a child on them.
• • •
“You need to talk to my friend Jenny,” Erika says when I confess what has been on my mind. “She’s like you.”
Erika isn’t kidding. Jennifer Kronovet is only a few years older than me and lives with her husband, Anthony, and her son, Solomon. She is allergic to milk, tree nuts but not peanuts, and sesame seeds—not quite the variety of allergies that I have, but equal in their severity.
“I go into minor anaphylactic shock,” she says with the casual tone I recognize from years of practice. “Even now, having learned to avoid those foods, things happen.”
When her parents sent her to college, they packed a box of infant formula. She liked to eat cereal in the mornings, and before the age of rice-, almond-, and soymilk options, that was all she’d ever used to pour into her bowl. I’m the last person to judge her for this. After all, I was the one they called “fish girl.”
The parallels mount up. When I was getting my birthday hazelnuts, Jennifer was being doled out one of her mother’s homemade pumpkin muffins, invariably still frozen rock solid from the elementary school’s freezer. She’d have to scrape at it with her teeth until it softened.
“We were trailblazers,” she tells me. Jennifer found comfort, as I did, in having a close group of friends who got to know her allergies. Even today, when she comes over for dinner parties, everything is labeled. “This is the Jenny-safe spoon; this is not the Jenny-safe spoon,” her hosts inform her.
“They joke, ‘It’s like we’re keeping Jenny-kosher,’ ” she says.
Her son turned one in April 2010. He is not allergic to milk, and has not yet been tested for nuts or sesame. (Earlier that year, a widespread recall for manufacturing defects effectively cleared child and infant doses of Benadryl, along with Tylenol, Motrin, and Zyrtec, off the U.S. market. That derailed a lot of at-home allergy testing.) But after trying scrambled eggs, he broke out into hives. His oral food challenges with baked egg and egg yolks have gone smoothly, so they’re going to try again with egg whites, which are often more allergenic because they contain a higher density of proteins than the yolks. Jennifer is hoping the first reaction will prove to have been a fluke.
“If he’s going to have an allergy, it’s so frustrating to have it not be the same allergy,” she says.
Because her husband, Anthony, is lactose intolerant, their household as a young couple had been virtually dairy free. Then came Solomon.
“I wanted to cut back on our breast-feeding, but kids get used to drinking milk. Soy has issues because of the hormones,” she says; some research indicates the phytoestrogens in soy and tofu may disrupt hormone balance in the body. “Rice milk is so sweet,” she adds. With her options dwindling, Jennifer decided to give cow’s milk a try.
She shares my fears about handling the dairy with her bare hands.
“I don’t like touching it. But nothing has happened so far.” Besides, there has been an unexpected therapeutic aspect to bringing milk into Sol’s life. “Watching him eat dairy is so great for me. It’s so much more wide-open for him—he’s liberated.”
In the interests of heading off any allergies that might form in the absence of exposure, her doctors advised Jennifer to “feed him what normal people eat.”
“You have no idea how little I know about what normal people
eat,” Jennifer remembers thinking. “Do normal people eat bread with avocado for dinner every night? Because that’s what I eat.” She has no choice but to be brave.
“I just want him to be able to eat as many different things as he can. We’ve tried Ethiopian food. We’ve tried rabbit.” She pauses. “For me, food has always been associated with fear and death. He takes so much pleasure in food.”
“The only sad thing is that he wants to feed me,” she continues. “ ‘No, Mommy can’t,’ I have to tell him. We have a whole play-feeding thing now.”
Jennifer has another friend who has given birth to a daughter severely sensitive to many things, including seeds and dairy. Mom has no allergies of her own. “She can eat off my plate, but not her mom’s,” Jennifer says of the baby they call “Jenny’s baby,” as if the stork dropped her off at the wrong address. “It’s a whole new thing to her.”
Like me, Jennifer wants to use her experience to help the next generation of allergic kids have an easier time. She tells people to use kosher guidelines to steer toward dairy-free desserts. She carries a translated note listing her allergies when she travels.
“I feel like I’ve accumulated a lot of tricks,” she says. “So much focus on feeding kids is about health. But there’s the social side, too. You need to tell them, if you’re out with your friends at a café, just get the French fries. You’ll be fine with fries.”
I ask what her biggest concerns are when it comes to her son’s diet.
“I’m more worried about him eating rocks and leaves and handfuls of dirt,” she says. “When it comes to something he’s allergic to, I know what’s going to happen. But eating a piece of glass off the playground—who knows?”
Food allergies are daunting. Yet with kids, she says, she has come to feel “there’s way worse things you’re going to worry about.” Her son is at an age when outgrowing his allergies is not only possible but likely. Yet if he still has his allergies when he is ten, or older, her perspective might change.
Another allergy mom who agreed to speak to me finds herself mulling over the future for her twelve-year-old daughter, who is allergic to tree nuts.
“I don’t think she understands, at some level, how serious it can be,” she comments, describing how one day her daughter lackadaisically mentioned a reaction to hazelnut. The teenage years loom large. “I hope someday she gets to kiss someone—but she’ll need to consider what he ate beforehand.”
Venturing into the world of alcohol won’t be easy, either. You can never know what cutesy cocktail is hiding a dash of Frangelico or Amaretto. “It looks very pretty,” she imagines having to warn her child, “but the umbrella doesn’t make it safe.”
In addition to sharing a tree-nut allergy with her daughter, her oldest, this woman is allergic to wheat (complicated by celiac disease), egg, and oranges. When she first got pregnant, she was determined to avoid passing along her problems.
“I stayed away from everything I was allergic to, plus all the other common allergens: shellfish, peanuts, et cetera,” she tells me. “I had a spotless house. You’ve never seen anyone clean so much. Hardwood floors, no drapes. I made my husband replace the blinds so we had the ones that catch less dust.”
“I either did everything I could,” she says, with a laugh, “or else exactly the wrong thing.” These days, doctors don’t recommend these tactics.
For her next child, she did nothing out of the ordinary, and at age eight, he seems to have no allergies. Yet in his early years of school, he refused to eat oranges or drink juice at school. Why? He had figured out, on his own, that his contamination with citrus prevented him from being able to kiss his mother when he got off the bus.
She does not keep oranges in the house; just the odor, she says, is enough to nauseate her. Her husband is not crazy about the ban on orange juice. He can empathize with avoiding foods—he had allergies to dairy and tomatoes in childhood—but he outgrew them, retaining only a few quirky sensitivities.
“He can’t touch escargot,” she says. “The last time he did was fifteen years ago, and it was awful.” So her husband is in charge of cooking eggs (hold the snails) for the kids in the mornings, using the same designated pan each time, which he cleans. She has asked him not to feed eggs at all to their youngest child, a one-year-old.
“I’m worried that if he’s not cleaned up properly, and I kiss him …” she lets the sentence trail off. “And he’s not a neat eater. He’s a messy eater.”
It’s strange to talk to someone who has a worse variation on one of “my” allergies. The virulence of her sensitivity to egg was brought home to them a few years back, when the family awakened one night to find a bat in the house—specifically, a bat tangled in her hair. Flailing caused it to attack rather than retreat, which is symptomatic of rabies; the bat fled to the attic before anyone could capture it for testing. So the whole family was subjected to rabies shots, which, like influenza vaccines, are cultured in egg.
“The first time was okay, the second time I felt sick, the third time I had breathing trouble,” she tells me. “The fourth time, I had anaphylaxis. By the fifth shot they had to give me a special version, cultured in human immunoglobulin.”
Unlike Dracula, wheat isn’t known for dive-bombing its victims in the night. But it can feel like a bat in the attic in their house: a constant, hovering threat.
“I’m neurotic and obsessive about everyone washing their hands,” she says.
I ask what the biggest challenge has been. “The struggle is not seeing myself in my kids,” she answers. She has to remind herself that every report of a “bad feeling” is not proof of some new food allergy. Every day, kids get colds, tummy aches, fevers, not to mention cases of outright-faking-it.
“And yet I’m trying to be sensitive in a way my parents, out of ignorance, were not sensitive to me,” she says. “My dad was of the mind that if you don’t vomit every time you eat a sandwich, you’re not really allergic to wheat.” Apparently, he never got over his skepticism.
“He was a stockbroker,” she says, “not a biologist.”
On the upside, her father’s refusal to recognize her condition meant she was allowed to do a lot more than most children with food allergies of such severity, including five-day trips to YMCA camp. Now she sends her nut-allergic daughter off to camp with three weeks’ worth of premade meals, which the counselors prepare using a separate pot and utensils, and two EpiPens.
I’m curious as to whether she’s ever used her own EpiPen. I get asked this a lot, and my answer is “No, but there were plenty of times I should have.” So I ask her.
“I would rather stay curled up in a ball, drink Benadryl until the cows come home, and miss life for twenty-four hours,” she says, “than use an EpiPen.”
“Why?”
“Honestly,” she says, “I hate to admit that kind of weakness.”
“Me, too,” I say.
This is one of those things you’re not supposed to say out loud. There is a legion of food-allergic adults out there who, year after year, buy epinephrine autoinjectors and, year after year, do everything in their power to avoid using them. At the end of the year, they expire. We buy them again. Again, we carry them everywhere. Again, we don’t use them. Meanwhile we advocate for much more liberal use of EpiPens in schools. Recently, the mother of a nine-year-old with food allergies put me on the spot.
“Is it fear?” she questioned. “Does it hurt? What can I say to my daughter that would make her use her EpiPen?”
I tried to explain to her that the inhibitor isn’t pain. A sting in the thigh is nothing when your throat is swelling shut. Maybe it’s that Benadryl and breathing aids are largely self-metered. You can treat yourself—“miss life for twenty-four hours,” so to speak—and come back with no one the wiser. Epinephrine tips that first domino in the line that leads to the hospital. Ambulance fees. Paperwork. IVs.
“But it’s not the injection that is sending you to the hospital,” my friend insisted. “It’s the rea
ction.”
“Let me be clear,” I said. “I’m not claiming these are the right things to do. I’m just telling you why I do them.”
I take this all back to my mother, wondering if she has a theory.
“It’s a control thing,” she says. “It runs in the family.” Even an issue as serious as food allergies cannot trump our basic natures. She reminds me of the reaction I had when I was seven or eight, out with my parents and grandparents. On our way to an exhibit of ancient Chinese artifacts, we had gone to dinner at Hogate’s, a local seafood place. Somehow my plate had been contaminated—maybe fried shrimp, maybe butter—and the roof of my mouth began itching. A few minutes into the car ride away from the restaurant, I had vaulted from the backseat into the front, so I could press my face against the air conditioner; a child’s version of an oxygen mask.
“Your father knew how to get to George Washington Hospital,” she remembers. “Then we sat forever in the waiting room.”
This was when I had always remembered him telling me, Breathe. Just breathe. What I had forgotten was my grandfather the doctor, borrowing a nurse’s stethoscope so he could take my vitals while we waited. My mother had called Dr. Latkin, my allergist, who prescribed steroids based on her report. My family essentially ran clinic out of the lobby. By the time they were ready to admit me, I was ready to go home.
“There was a risk to how we handled things,” she says, admitting that it is sometimes one she regrets in hindsight. “I remember that reaction in Nashville, or that one to pistachios. You could have died. But we didn’t want you to grow up with hospitalization after hospitalization. And the way you are now, so independent—I do think it comes back to that, a little.
“At least,” she adds, “I hope so.”
For weeks I’ve been obsessing over the ways food allergies come between a parent and child. The rejection of breast milk; the anxiety of a mother trying to cook foods she would never touch for herself; the hesitation of a child who does not want to give his father hives with a kiss.
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