The airline's customer-service agent thought she had a real kook on the phone. I'd just asked what I thought was a straightforward enough question: "Does the soap in your airplanes' restrooms have almond oil in it? It always smells of almond essence to me." The agent replied, "I could spend all day trying to find the answer to that question, ma'am." I tried explaining that my daughter is allergic to nuts, and I wanted to know if I would need to carry my own soap when I packed for our trip. I assumed that someone could look at the ingredient list on a bottle of hand soap on any airplane and just tell me yes or no. Instead, I was put on hold and eventually gave up and e-mailed my question to the customer-service center.
Such is life when you have a child with food allergies. Most people don't understand unless they have a child who's similarly afflicted. Even I, a practicing pediatrician, never realized how much food allergies can take over so many aspects of daily life until my now 7-year-old daughter, Sophia, was diagnosed with peanut and, eventually, tree-nut allergies.
It all started when Sophia developed terrible eczema at 2 months. Thinking that a milk allergy was contributing to her skin problems, our doctor ordered blood tests when she was 9 months old. Her lab tests were negative for milk, but to my surprise, her peanut numbers came back mildly elevated. Skin tests may be more accurate in diagnosing food allergies, so I made an appointment with Helen Skolnick, M.D., a physician in New Jersey who specializes in food allergies.
At the consultation, Sophia reacted so strongly to the peanut skin prick on her back that the nurse came running with Benadryl as hives quickly spread all the way around to Sophia's chest. Before I could digest what was happening, Dr. Skolnick had swooped into the room with handouts on nut-free diets and support groups for parents. She explained how an injection of epinephrine from an EpiPen could be lifesaving in the event of cardiorespiratory collapse from an allergic reaction.
Epinephrine? Cardiorespiratory collapse? At that moment, I could not fathom that Sophia could have such a severe, life-threatening allergy. And wasn't I the one who was supposed to be giving parents these instructions and using the big medical words? Instead, I ended up red-faced when Dr. Skolnick asked me to demonstrate the proper use of the EpiPen, something I often teach parents to do in my own office. I still cringe to think of how she corrected me when, in a state of shock, I forgot to remove the safety release on the device before pretending to give the injection.
Then Dr. Skolnick delivered the real shocker: Sophia's off-limits list included Chinese, Thai, and Indian food due to the prevalence of nuts in their cuisine. No Chinese food? But I'm Chinese! In the food of my native Singapore, and throughout all of my beloved Southeast Asia, peanuts are ubiquitous in satay sauces, curries, and even salads. I was supposed to deny my child her culinary birthright? For the first time, I knew what it felt like to leave a doctor's office feeling deflated by bad news.
Putting Allergies in Perspective
Courtesy of Jean Goh
I tried to put all these things into perspective by reminding myself of the hundreds of worse diagnoses Sophia could have faced. I cleared the cabinets of anything containing nuts. I learned to read ingredient labels carefully. When I went to the supermarket, anything labeled with "may contain traces of peanuts" or "processed in a facility that also processes tree nuts" stayed on the shelf. At 9 months, Sophia wasn't eating any of these foods yet, but they were still too risky to have around. If one of us had a scoop of Rocky Road before giving our daughter a kiss, it could trigger a reaction.
Ultimately, it was the parents of my own patients with food allergies who helped me cope with Sophia's diagnosis. One mom in particular comes to mind. A tireless advocate for her child, she convinced her insurance company to cover extra EpiPens so he could have one at home, in the school cafeteria, in the nurse's office, and in his backpack at all times. She taught me not to fear Halloween, when I have to deny Sophia most of the candy in her bucket. Instead, this mom advised me to carry my own stash of nut-free treats so Sophia can trade with me for a safe piece of candy each time she receives a nut-filled one. Another mom admitted that she used to be hesitant about asking her mother-in- law not to serve the family's favorite pecan pie at Thanksgiving. She felt like a nuisance and had to remind herself that protecting her son was the priority. I think of this patient and stand by my guns when I prohibit nuts at my own mother-in-law's house.
Considering how helpful my patients have been, I'm embarrassed to think back to when I treated food allergies as just another diagnosis. Before Sophia, if I saw a child with a peanut, soy, egg, or shellfish allergy listed on his chart, I would ask if the parent carried emergency medicines. EpiPen? Check. Benadryl? Good. Then I would move on. Now I know how inadequate I was in counseling those parents and how little empathy I showed.
I hope that I'm doing a better job now. When I see these patients, I go beyond checking on their medications. I thoroughly explain how to read food labels. I stress the importance of having everyone in their life -- friends, babysitters, teachers, and grandparents -- understand the diagnosis and how to react in an emergency. And I tell them about fun nut-free snacks that can be taken to playdates and parties. At the very least, I can fully sympathize with the daily challenges these patients and their families face. As a parent, I pray that I will never receive a call from school telling me that Sophia is having trouble breathing because she ate peanut butter by mistake. As a physician, I look forward to the day when scientists announce a cure or at least a vaccine for children who have food allergies.
I did eventually receive a reply by e-mail from the airline, informing me that the soap on its planes does not contain any nut oils. As I packed, I made sure we had EpiPens, Benadryl, and nut-free snacks in our carry-on bags. But at least we didn't have to take our own soap.
Originally published in the September 2012 issue of Parents magazine.