Don't Kill the Birthday Girl (4 page)

Ultimately, food allergies can be confirmed only with an oral food challenge. This is a fancy way of saying that you eat a teeny-tiny amount of the food, and you see what happens. There is a protocol for treating food challenges as a medical procedure: a single-blind or double-blind test administered in the office, in which the allergen is incorporated into “safe” food, where it will be hidden from the patient's view, paired with a purely “safe” food—to test for a placebo effect—and then the patient is monitored for a response.

Many doctors question the efficacy of such a formal testing route. Single-blind testing is useful only if the doctor is a good actor whose body language and lines of questioning won't tip the patient off to which bite contains the allergen. Allergists are not used to having to fool their patients, especially young ones. Double-blind testing requires the intervention of a third
party to create food samples, and the prep work and subsequent monitoring can stretch each test into a six-hour session. This isn't realistic for the schedule of a lot of families, and it's a financial loss for the doctors. Most HMOs equate testing to a single “appointment,” no matter how long it takes, and compensate accordingly.

So most families end up testing at home, one lick and nibble and half spoonful at a time. Once, I was telling someone about the process when, unfamiliar with the terms I was using, he stopped me and asked, “ ‘Food challenge?' As in, Sandra versus peanut?”

Kind of. Though I've always thought of it more in terms of Russian roulette.

CHAPTER TWO

Surviving Childhood

R
aising you,” my mother has said more than once, “was a full-time job.” Soon after my diagnosis of multiple food allergies, the doctors charged her with narrowing down the list of specific culprits. My mother, the lab scientist. This is the first of many ad hoc professions forced upon the parent of a child with allergies.

When I was five months old, she followed orders by giving me a small, exploratory lick of an ice cream cone. Not many children holler
after
getting their ice cream. She could hear my cries hoarsening by the second as my throat began to swell. She added that noise to the dictionary of cries developed by all new moms: hungry cry, attention-hungry cry, overtired cry, scared cry, and now closing-airway cry.

The rest of my reaction vocabulary slowly emerged. Often I
tried to ignore an attack at first, embarrassed I might have done something wrong and fearing the trouble that would follow. The giveaway was the audible wheezing as my asthma kicked in. I made a peculiar
squonk
sound when the back of my mouth itched: a loud, convulsive flexing of tongue against palate that I still do today, often four or five times in a row, unaware I'm even doing it. My mother took to watching for these warning flares, sometimes recognizing a reaction before I had fully admitted it to myself.

One night, when I was ten, she secretly switched from using hard-to-find Fleischmann's sunflower margarine (unsalted sticks only—not regular, not “light,” not in the tub) to a new, more widely available nondairy spread. She was tired of having to hunt through three different grocery stores every time she went shopping. I noticed the mashed potatoes were a little smoother and more golden but figured it had to do with using russets versus Yukon Golds. After my first few bites, I noticed her watching me. Intently. “Do you like the mashed potatoes?” she asked.

“Yeah,” I said. “Why?”

“Well, you're rubbing at your mouth like you do sometimes when your lips itch.” (My mother, the detective.)

One round of
squonking
and a Benadryl later, I was sleeping it off and she was tossing the impostor spread in the trash. The next day she got out her shopping list.
Fleischmann's
, she added back.
Unsalted
.

When a reaction struck my esophageal system, I could describe the inflammation only in terms of “bubbles” rising up in my chest. The frequency and intensity of the pressure, which seemed to rise, swell, and pop in waves, then had to be converted
into usable medical information on whether the Benadryl was working. “This is serious,” I remember my mother saying in frustration while on the phone with a Kaiser Permanente nurse. “She says the bubbles are getting bigger.”

There were always concerned phone calls—if not to our HMO then to her father or brother, both doctors. My grandfather was a navy officer who had worked with NASA's space program. He was used to treating stoics and was initially skeptical about the severity of my allergies. On one of my first visits to my grandparents' house, I scooped my finger into a bowl of cottage cheese and then touched my cheek. Within seconds, a line of hives rose up. That was when he became a believer.

We were fortunate to never encounter disbelievers among the staff and teachers at my schools. Or their skepticism, if present, was trumped by their fear of lawsuits. They wanted to help—assuming we could just, please, get those forms turned in first. Please. In duplicate. Every year brought one form for my Benadryl, one for my inhaler, one for my EpiPen; one note for field trips, one for allergy shots, and one requesting the early lunch shift, when the cafeteria tables were cleanest. Every year, slightly different versions required precise wording and fresh signatures. (My mother, the contracts lawyer.)

Once I was in school, my mother went from being the one making the calls to the one who received them. Constantly. Even after you create a protocol for lunch, food pops up in a myriad of settings. When we read Dr. Seuss in second-grade story time, the class made green eggs and ham. In art class, we used pasta shells and wheels for texture. We were studying the Spanish explorers in world history, so was there a kind of taco I could eat? Could I try the funnel cake on Field Day?

Rather than try to shepherd from afar, my mother simply came along on field trips. Accidents still happened. When thirty kids from our elementary school went to the Benihana Japanese steakhouse for lunch, I ran over to my mom to share my news: “I can eat steak!”

“How do you know that?” she asked.

“I just ate some! A bite. Can I have more?”

In the chaos of a hibachi table, I had been diced a portion of teriyaki beef instead of chicken. I not only lived to tell the tale, but for a honeymoon period I could eat steak. My mom, sensing that it was a fluke, restricted access to either very special home-cooked meals or when absolutely nothing else was available, and never more than a small portion. Even with only infrequent exposure, my mast cells soon caught on to the cow. The reactions began, and became quite vicious quite quickly. My farewell bite of filet mignon was in 1991, followed by an hour of making
squonk
ing noises as I curled up on the couch.

Given my spectrum of issues—a variety of allergens, a capacity for anaphylaxis, and an ability to develop new sensitivities upon repeated exposure—my allergies constitute a disability. I am protected under the Rehabilitation Act of 1973, Section 504, and the Americans with Disabilities Act of 1990. Had my parents judged a school ineffective in managing my food allergies, they would have had legal recourse to insist on a binding “504 Plan,” including an individual health plan (IHP) that would have covered everything from evaluating my capacity for self-care to listing all my allergies and their attack symptoms to naming safe food substitutions. They could have demanded that a “Severe Food Allergy Alert” flyer be posted throughout the school. They could have confirmed that my bus
driver (by name) had been instructed not to allow eating on the ride to school.

In other words, they could have swatted a fly with a machete. But for every forty times a 504 Plan would be overkill, there might be the one time when it is critical. Back when I was a kid, and food was being handed out to everyone else, my “accommodation” equaled having the teachers know not to give me a share. True accommodation would have been providing a comparable substitute, but I was too embarrassed to ask.

That said, what if the food being given to me had been my main food for the day? I remember one kid in the class who lived off those snacks, because he didn't get anything at home. For students receiving free or reduced-rate meals, it's hard enough accepting help without being made to feel like Oliver Twist, pleading for more gruel because it is the only edible thing on your plate. A 504 Plan provides outside leverage.

But it takes a lot of red tape to weave together a safety net. A typical IHP consists of sections A through O that include a list of participating parties, doctor's letters, a narrative summary, and fine print. The plan can antagonize school officials by priming them to worry about liability. For most kids, an emergency action plan (EAP) will do—a less formal but still informative document that focuses on crisis moments. The most common one uses a format endorsed by the Food Allergy and Anaphylaxis Network (FAAN) and can be downloaded for free from their website.

One day, years out of school and visiting my mother's house for coffee, I showed her a copy of an EAP. It included a square for the child's photo and a checkbox for reaction-exacerbating asthma. Step one described “Treatment,” a range of symptoms
matched to a checkable set of options to give epinephrine or antihistamine, with additional space to note the dosages. “Step 2: Emergency Calls” provided a field for a doctor and a field for a parent, with the addendum “Do not hesitate to medicate or take child to a medical facility!” The form offered a place to identify three school staff members trained at using EpiPens or Twinjects, and—in case none of the staff could be located—illustrated instructions on how to administer the injection.

My mother took in the generously sized blanks, the boldface type, the arrows showing which end of the EpiPen to pull off when activating it. She shook her head.

“Yeah, this is all new,” she said. “This would have been nice.”

A primary motivator for these standardized plans was a 1992 study on fatal and near-fatal food-induced anaphylaxis in children and teens, in which it was shown that four out of the six deadly attacks (but none of the seven near fatalities) recorded in the study took place in school. In other words, allergic children are offered some protection from potentially fatal allergens by the bulwark of a school environment. But once exposure
has
occurred, the bureaucracy of classroom decision-making (to give Benadryl, or EpiPen? one Benadryl, or two? does the teacher administer the EpiPen, or should the school nurse?) can cost precious minutes and therefore lives. And in fact, all the in-school fatalities were associated with appreciable delays of epinephrine injection. The minimum delay was twenty minutes. On average, seventy-five minutes usually elapsed before an injection occurred.

In Ontario, Canada, the death of thirteen-year-old Sabrina Shannon, who had an allergic reaction to curds on cafeteria French fries and subsequently collapsed in the hall of her high
school, was partially attributable to a delay in epinephrine treatment. Her mother, Sara Shannon, became a crusader for laws requiring fixed anaphylactic response plans in schools. This sparked a piece of legislation known as “Sabrina's Law,” and a wrenching documentary by the same name.

Granted, every child with potential for anaphylaxis should carry epinephrine within immediate reach and be trained to instruct those around them on when and how to use it. But younger kids might not be able to grasp the concept—or might forget all their lessons when panicked for breath. Worse yet, some anaphylactic reactions (as many as 19 percent, according to one study) require two injections before the emergency crews even arrive. Given that an insurance-covered EpiPen costs fifty dollars a pop, and the dose has only a year-long shelf life, to ask every child to carry two is a significant financial burden. There should be an unexpired epinephrine injector in every school's first aid kit, in a known and unlocked location, that can be used to augment an allergic child's primary supply.