Don't Kill the Birthday Girl

by Sandra Beasley

  I remember going to my doctor years ago, when my mother had heard about “anti-IgE medicine” on the news. She’d wondered if it was something I should pursue.

  “The thing is, your body is supposed to release IgE in response to a lot of things,” my skeptical HMO internist told me. “Think of those treatments as a broadsword. What you need is a scalpel.” One of the advantages of Chinese herbs over Xolair, besides cost, is their record of use in folk medicine. We have the reassurance that generations have ingested them without causing internal catastrophe.

  Would I try the Chinese herbal treatment, if and when the pills are in general circulation? I don’t know. When I will later mention it to my mother, upon return to D.C., she will bristle instinctively against the risk. “You couldn’t try all nine herbs at once,” she will caution. “What if you react to any one of them the same way you do to mustard?”

  The panel wrapped up, and I hung back as reporters swarmed the three doctors. Though I wanted to talk to them, I wasn’t sure what I had to say anymore. I wanted to applaud their research, yet I kept thinking about the high stakes and low yield of these therapy techniques. I tried to wrap my head around how many cycles of testing, peer review, and government approval would have to take place before the general food-allergic population sees OIT as an option in their local allergist’s office. From a reporter’s perspective, solving the problems of one allergic kid heralds “a cure.” From a patient’s perspective, our success stories are just beginning to be counted in the double digits, out of the millions affected.

  Part of what hinders research is that few people want to volunteer their kids as guinea pigs. We’re early enough in the allergic-population boom that there are not that many peanut-allergic adults available for testing yet, though that may change in a decade. Besides, when trying to fight a disease that can present differently (and more severely) in childhood, adult subjects alone are not an effective predictor of treatment potentials.

  There are some experiments where animal subjects are useful. Standard laboratory mice have been made “allergic” to peanuts and egg by feeding the mice with a combination of allergen protein and enterotoxin. An enterotoxin is a toxin associated with gastrointestinal distress—such as staphylococcal enterotoxin B, which is linked to food poisoning, or the cholera toxin. The mice’s resulting immunological response resembles that of an allergic reaction, because they increase production of white blood cells related to mediating airway inflammation. There appears to be an enduring allergic sensitization.

  Then what? You try placing a droplet under that little mouse’s tongue, much less ask Stuart Little if his throat itches. Let’s face it: in a field where self-reporting of symptoms is critical, there’s only so much you can do with a mouse.

  A parent’s decision to enter his or her child in a clinical trial has to weigh many factors. For some families there is a financial incentive—an opportunity to have scratch tests and RAST tests performed for free, not to mention the potential benefits of the experimental treatment. For most, it comes down to where they balance on the seesaw between optimism and frustration.

  Riding down the escalator of the convention center, I overheard two allergists commiserating over their lack of experimental samples.

  “We needed soy. But soy is impossible to get.”

  “I wish I’d known! I had a dozen soy, then sent them on out to California. Are you looking for egg?”

  How odd to be spoken of not as a person but as a vial of allergic blood. I am Soy. I am Egg, Cow’s Milk, Tree Nut. A few soft approaches were made to my parents, when I was young, suggesting that we might take part in the studies being mounted at Johns Hopkins, just an hour up Route 95. We shrugged it off. I’m not a good donor; my veins are hard to find, easily bruised. I didn’t want to spend my summer as a lab rat.

  Now part of me wanted to lean forward, tap one of those doctors on the shoulder, and offer up my arm for the draw. Which would have been, to use professional parlance, “a really freaky thing to do.” So I did nothing.

  Later that night, back in the hotel room, I pored over the materials I had picked up during the day. In the Fall/Winter 2009 issue for a newsletter called Support Net, I found an article by journalist Beth Puliti that profiled the experiences of three mothers whose children agreed to take part in experimental studies.

  Puliti wrote about one parent, Joy Hogge, Ph.D., who hoped her nine-year-old son might build up a tolerance to peanuts. But in the double-blind study, his dose of applesauce mixed with powdered substance (peanut, though the “blind” doctors didn’t know that) resulted in an anaphylactic reaction that raged through a shot of epinephrine, several Benadryl, three days’ worth of steroids, and an oxygen mask.

  Hogge was amazed when, one month later, he agreed to a second attempt at desensitization. Several weeks into treatment, his threshold had hit a plateau of 12 milligrams. He struggled with stomachaches, itchy throat, and asthma-like attacks.

  “These symptoms, along with his memories of the challenge and the fact that he learned he hated the taste of peanut, were very hard for him,” Hogge told Puliti. “He decided to discontinue the study.”

  I put aside the article to reread it more thoroughly once I was back at home. Later, it clicks: Arkansas. The trial’s only identifier is its location, Arkansas Children’s Hospital in Little Rock.

  At the press panel, we had all been inspired by hearing about the twenty-three children who were taking part in the oral immunotherapy treatment for peanut administered by Duke and … the University of Arkansas for Medical Sciences, which partners with ACH. Fifteen children who had received OIT treatment all along (eight had received placebo) had already experienced increased desensitization, the ability to eat those precious fifteen peanuts without reaction. But looking at the parameters of the abstract, I realize that twenty-nine subjects were originally enrolled. Six did not make it to the oral food challenge stage. Had Hogge’s son been among the six?

  There must have been a moment when the doctors running the trial said, among themselves, “This kid is not going to be desensitized.” Then they may very well have said to the mother, “It’s up to your family.” And perhaps she had said to her son, “It’s up to you.”

  I’d thought that parsing out these gaps between what is said and what is believed would be revealing, even strategic. But the gaps are simply a matter of human nature. These doctors are as hopeful as they can be and as helpful as they can be, but at the end of the day, they’re human. It’s a big relief. And frightening.

  • • •

  On my last day at the AAAAI conference, I walked through the exhibit hall. Laboratories, professional societies, advocacy groups, medical supply companies, and niche start-ups all jostled for the attention of the crowd. There wasn’t much of a crowd to be jostled for—more a scattering of people here and there. With tightrope precision I stayed to the center of each aisle, to avoid outstretched hands offering brochure after brochure. Paper is the enemy of trying to travel with only a carry-on bag.

  Occasionally a free sample would lure me to a vendor’s table. I picked up a couple of packets of SunButter, a salty, oozy, oddly tasty spread made from sunflower seeds. If there can be a plus side to an epidemic, it might be the profusion of “butters” produced in the wake of peanut allergies.

  I said hello to the folks from FAAN. I left a card for the people from the Food Allergy Initiative. I talked for a while to the woman who founded Kids With Food Allergies, which publishes the Support Net newsletter. Kids With Food Allergies is a Pennsylvania nonprofit that focuses on creating a network where families can share tips for coping with allergic conditions. We got on the subject of birthday cakes, and she told me that some parents are forgoing food-based treats entirely. Instead, the cakes were made of felt, decorated collaboratively by classmates as a gift to the birthday kid.

  Each year, the AAAAI conference gives free exhibit space to a particularly deserving and urgent cause. This year’s recipient was The Mastocytosis Soc
iety, dedicated to serving those with overactive mast cell populations, which means someone who is trapped in the perpetual state of inflammation and edema associated with allergic reactions. The TMS table workers had bright smiles, a pile of flyers, and high-end swag in the form of emblazoned flashlights. None of it did any good. The exhibition room was where people came to wander as they sipped their coffee or had a quick lunch, yet their display could not have been less appetizing. No one wants to stare at an oversized picture of a pustule-covered little girl as he eats a Thai chicken-salad wrap.

  Far more popular were the megabooths sponsored by pharmaceutical companies. These booths, which were set off by their own swaths of carpet and stand-alone lighting, featured made-to-order kettle corn, free massages, and robots. The star of the floor was an electronic creature sponsored by Asthmatx, Inc., as part of the publicity push for Asthmatx’s Alair Bronchial Thermoplasty System. Sporting a plastic faux crewcut, yellow-lensed sunglasses, and the name VASO on its plastic-polymer clavicle, this eight-foot-tall creature bounced on two independently controlled feet as he took questions and cracked jokes with the audience.

  “You think I was born this way?” he bragged, flexing. “I work out.”

  The robot’s body was paneled in purple and blue, with a torso too slender for an actual person to hide inside. I’d heard about this technology before. Somewhere nearby there had to be an operator, seeing through cameras behind the robot’s eyes, hearing through microphones planted where its ears would be, and wearing an exoskeleton of body sensors that translated every move in real time. The robotics industry calls them anthrobots.

  Every few minutes, VASO would break out in dance in response to a prerecorded sound track. The track, every time, was the Bee Gees’ “Stayin’ Alive.” No one else seemed to find this an odd choice to promote a breathing medication.

  “You lookin’ at me?” he asked. “You lookin’ at me?”

  I had reached my saturation point. Too many slogans. Too many business cards. Backing away from the Alair booth, I began navigating toward the exit.

  Before I reached the double doors, another robot caught my eye. It was silver, about six feet tall, with big, blue bug eyes and a butler’s posture, vaguely masculine. Its squat, wheeled base evoked Johnny 5 in Short Circuit.

  I stepped closer, checking for the logo of the robot’s sponsor. Sanofi-aventis U.S., otherwise known as the makers of Allegra. I felt an unexpected surge of pride. I’ve been on Allegra for years. Claritin, Seldane, Zyrtec—all the other allergy medications used lactose-derivative binders that, after reaching a few weeks of critical mass in my bloodstream, had caused rashes to break out along my forearms. Only Allegra had proven safe. So I’d fought for it, even when several different HMO insurance plans had tried to switch me to generics or substitutes, and paid out of pocket at times. If this was a pennant race, I’d stumbled across the bleachers for my home team.

  Should I go over? The robot, which had been making polite conversation with a woman in a navy skirt-suit, pulled a three-point turn to face me. We looked at each other.

  “Hi, Sandra,” he said.

  I raised my hand in a half wave, confused by this familiarity. Then I remembered I was wearing a name tag. I looked around, sure I’d spot someone speaking into their wrist or lapel. But the voice behind the robot was well camouflaged.

  “Hi,” I said.

  “Come closer,” he said. “I won’t bite.”

  I was tempted to step onto Allegra’s carpeting. But I was conferenced out, and New Orleans was waiting.

  “Next time,” I said.

  “I’ll miss you,” he replied. The bulbs behind his eyes blinked.

  I put my fingers to my lips and blew a kiss to the robot. Then I turned and walked away, away from the convention center, away from the doctors. I did not look back.

  CHAPTER TEN

  The Nature of Nurture

  Several years after our ill-fated Lemon Drop shot at Maarten’s, Kristen was still my best friend, her now husband, Bob, was no longer a fireman, and Keira—their daughter—was approaching her first birthday. There was talk of cake. Not any old birthday cake, but a cake in the shape of a ladybug, spiked in pink and brown frosting (more appetizing than red and black), complete with Twizzler legs and antennae, and Hershey’s Kisses pressed tip-down into the yellow cake to provide ladybug spots. In fact, make that two cakes. One for the party guests, and one custom-sized for Keira.

  On the day of the celebration, I was running late—as always, underestimating the slog of traffic from my downtown D.C. apartment to their house in the suburbs. Every few minutes, I checked the clock, groaned, and patted the bright bag on the passenger seat. Maybe the set of mirrored, bejangled building blocks I’d bought as a gift would be my ticket to forgiveness.

  When I finally walked in, more than an hour into the party, I wasn’t surprised to find a full and well-decorated house. Somewhere in between hemming the dresses of her own bridesmaids and remodeling her kitchen from scratch, Kristen had become the Martha Stewart of our group of high school friends. (Not the saccharine Martha, either; the sarcastic, fun, post-penitentiary Martha.) The dining room table was arrayed with homemade punch, 1st Birthday napkins, sandwiches, and skewers of chicken satay. I smiled, noticing every sauce and dressing was set on the side. Sandra-friendly.

  “Hey there,” Kristen said as I put my bags down. I hadn’t fully adjusted to viewing Kristen in mom mode. I still saw the fourteen-year-old who painted daisies on her toenails with three different shades of polish. Today her nails were gunmetal silver, a yelp of freedom paired with an otherwise practical gray T-shirt, jeans, and bobbed hairstyle. She was leaning down to catch Keira, who lurched across the living room with the manic gait of a new walker. Keira let out a profound squawk of protest as Kristen scooped her up a few feet shy of reaching her destined play set.

  “She’s a little overwhelmed,” Kristen said. “She had a low fever all morning. And it’s a lot of people.”

  Keira’s ladybug shoes matched her ladybug cakes. The ladybugs on her T-shirt were so cartoonishly round that they resembled polka dots, and I felt a wave of nostalgia. Just a few days earlier, my mother had reminded me that on my first birthday—the day when, as my mother always notes, I went in for my first allergy appointment—I had been wearing a pink-polka-dot dress.

  Kristen sent one of her in-laws down to round up the men drinking beer in the basement, and I worried with a twinge that she had been waiting on my arrival to cut the cake. That was an exercise in futility, since I could not eat the cake, nor the Neapolitan ice cream, nor the individual chocolate crisps in their pink foil cups. But maybe Kristen knew I’d want to witness the big moment.

  “Those are some amazing ladybugs,” I told her.

  “The black licorice turned out to be on the stale side,” she said. “So that’s for decoration only. Otherwise, so far, so good.”

  At every child’s birthday party I have attended, the same truth emerges: a cranky one-year-old does not treasure being stuck in a high chair, surrounded by two dozen vaguely recognizable blobs of adulthood. Nor does she want a special hat, decorated with paper fringe, strapped onto her head with an elastic band. Nor does she want to be serenaded with “Happy Birthday.” Yet this is what we did, because it is what is done at birthday parties. The crying erupted. The hat came off. Kristen offered up the ultimate birthday throne of a mama’s lap, and finally—with Keira calmed down, and the offending licorice set to the side—we were ready for cake.

  As the grown-ups passed around slices of the big ladybug, Keira stared at the tinfoil platter that held her mini version, dotted to scale with chocolate chips instead of Hershey’s Kisses, and frosted with two wide eyes and a pink grin. Kristen placed a chunk of cake in the baby’s grasp and waited. Instead of eating, Keira brought up the icing-rich fingers of her left hand to her face with a Why me? flourish. Gobs of pink soon coated her cheek, forehead, and hairline. She rubbed at her mouth, leaving behind streaks of what looked like do
llar-store lipstick.

  “Good thing you took photos beforehand,” one of the guys said.

  We kept waiting for Keira’s triumphant bite of cake, but it never came. She just played with it. The women ate twice as enthusiastically, trying to make up for the birthday girl’s apparent hunger strike. The men drifted back downstairs to where their beers were waiting. Kristen bounced Keira on her knees, then stood up and began pacing as the baby grew increasingly agitated, fussing again and again at her ears with her grimy fists. They went upstairs, we figured for a diaper change. When they came back down, I was surprised that she hadn’t wiped the frosting off Keira’s face.

  “I think she’s having an allergic reaction,” Kristen said, looking at me. The pink on Keira’s face wasn’t frosting; it was hives that had come up underneath the frosting. This had never happened to her before. It wasn’t only hives. Leaning in, Kristen had been able to hear her daughter wheezing for breath. One phone-call consult later, Bob and Kristen were getting ready to take Keira to the hospital. They draped her in a coat, rather than taking the time to work her arms through the sleeves, and scooted out into January’s cold.

  “It’ll be fine,” I’d said to them. “You go. We’ll clean.” It was a promise I meant but couldn’t actually keep. The dining room table was covered in things I couldn’t touch without breaking into hives of my own. Melted ice cream pooled on the dirty plates. I did a quick round of cup-and-napkin duty. Then I stood by helplessly as Bob’s mother, sponge in hand, directed the clearing off, washing out, and stacking up.

  “You’re the one with all the allergies,” one of Kristen’s friends said to me. “What happened?”