Food Allergies

Over the past few weeks, I’ve followed the story of my friend’s daughter who has childhood schizophrenia. Janie is six, intermittently violent, and at least until recently, largely ignored in the medical community. She has invisible friends who bite and scratch her if she tries to refuse their demands which include attacking people who call her by her full name, January. On June 29th, the Los Angeles Times put Jani’s story on the front cover, above the fold, and in the subsequent couple weeks, her story has been picked up by ABCNews, NPR, and news outlets across the country. I’ve found myself regularly reflecting on Jani’s situation over the past few weeks and hoping that she and her parents are at least getting some of the help they need.

Until two days ago, Jani’s story has been, for me, a reminder of how very lucky I am. My daughter, Sophia, is healthy, smart, and, with the exception of the standard two-year-old kid stuff, she’s really well behaved. Of course, Sophia is not without her own issues. She has had eczema since she was born which requires a daily regimen of lotions, oils, topical medications that do little to stop the flaking, cracking, and itching she endures with little complaint. She’s also, at two and a half, already had bronchitis four times, which her doctor informs us indicates a strong likelihood that she’ll develop asthma. We own our own nebulizer, and Sophia knows that a certain type of cough coupled with labored breathing means she has to use her special medicine. And, as a child who spends a fair amount of time in daycare, she’s come home with a smorgasbord of childhood illnesses.

Although Sophia has gotten to know her doctor better than we wish she had at this point in her life, for the most part, her health issues have been relatively minor. She hasn’t had any debilitating diseases or conditions, she hasn’t been in any real mortal danger (or at least, not any more than your average curious child), and she hasn’t been forced to live with treatments/accommodations that seriously encumber her daily life.

If you’ve read this far, however, you must be wondering when I’m finally going to reveal that, in fact, some new piece of information has been revealed that has irrevocably changed Sophia’s life. Well, your patience has paid off. On Wednesday, Sophia ate half of a peanut. Within minutes, her voice was raspy, her lips were swollen, and she said, “Daddy, I need the breathing medicine.” Three hours later, we left the emergency room with a sleeping baby (the mixture of excitement and Benadryl finally overwhelmed her energizing curiosity) and guidance to see our primary care physician. In an ironic twist, we had been in to see our doctor a couple weeks prior for a cough, and she ordered a round of allergy tests. On Thursday, just one day after our outing to the E.R., the results came in: Sophia is “severely allergic” to peanuts. She is also severely allergic to shellfish and shrimp and mildly allergic to cow’s milk, wheat, soy, egg whites, cats, dogs, dust mites, and cockroaches.

In essence, between the beginning of Wednesday and the end of Thursday, my wife and I learned that our daughter could be killed by a peanut butter and jelly sandwich, a cup of lobster bisque, or a Snickers bar. We now have to carry around an EpiPen, which is a nice way of saying we have to tote around a pen shaped device filled with epinephrine to jam into our child’s leg in the event she inadvertently ingests peanuts or shellfish and her throat closes up so quickly that an ambulance might not be able to reach her before she suffocates on her own swollen tongue. As the E.R. doctor told us, “this is a life changer.”

We’ve already begun to feel the shift. Our diets have changed overnight. I bought a candy bar this afternoon, and when Sophia asked for a bite, I dutifully made sure there were no peanuts involved in its manufacture. The good news: no nuts; the bad news: chocolate covered marshmallow has soy lecithin, egg whites, and cow’s milk. Other revelations: the first ingredient in sourdough bread is wheat flour; goat’s milk yogurt costs nearly 4 times more than cow’s milk yogurt; rice milk has a bold warning to consult a doctor before serving it to anyone younger than 5 years old; and nougat is made with almond extract (which she may or may not be allergic to. When we asked her doctor if a peanut allergy would mean she’s allergic to all nuts, she laughed. “I wouldn’t take a chance.”). The E.R. doctor wasn’t kidding.

I woke up this morning from a dream in which I had to administer an epinephrine shot to my dying child. In my dream, she didn’t understand why I was stabbing her in the leg, and she alternated between suffocating and pleading for me to stop hurting her. Needless to say, it wasn’t a great way to wake up, and it got me thinking about how different things may need to be moving forward.

I have been trying to rationalize my fears about Sophia’s allergies, and I know that she is no different today than she was before we knew about her allergies. We’ve managed to avoid any serious reactions for almost three years (save Wednesday night’s fiasco), and the foods to which she has minor allergies haven’t done any significant damage to her thus far, so if we aren’t quite as diligent as we need to be with ferreting out the hidden properties of marshmallow confections, she should be okay. And it’s not as if peanut allergies are rare or unfamiliar to most people. Restaurants, schools, and doctors are often very sensitive to the needs of people with various allergies. Still, while I know that Sophia is capable of living a long and satisfying life in spite of her allergies, I have spent a lot of time worrying about her over the past few days as if she’s transformed into a fragile, defenseless invalid.

Sophia’s allergies will no doubt have many unexpected consequences. For example, we’ll no doubt become dietary experts, at least as far as our child is concerned. Another unexpected outcome of Sophia’s newfound “condition” that I’ve been thinking about today is that I feel a new sense of empathy for Jani’s parents. This morning I was reading most recent blog post about Jani, and it is clear that her parents are struggling with the choices that they have to make about her care and her future. I know that what we’re going through doesn’t begin to compare to what they are facing every second of every day. (I’ll sleep comfortably most nights, if occasionally I have disturbing dreams in which I have to stab my child.) By the same token, Sophia’s mom and I have a small sense of the lack of control that Jani’s parents must feel, and I hope that we can take a lesson from them and learn to better appreciate the times we have with each other.