by Joanne LaSpina
While the wailing of the ambulance siren accompanied our dash through the streets of Ocean City, New Jersey, my thoughts revolved between, "Please God, let him be okay," and "How could I let this happen to him?"
I lay on a stretcher holding my two-year-old son, Adam. He had an IV in one arm, electrodes taped to his chest and an oxygen mask over his nose and mouth. His skin was bright red, as though he had severe sunburn. His face and tongue were swollen and he was violently scratching his skin. I was telling the EMT's that I had given him the wrong muffin. I had mistakenly given him a regular chocolate chip muffin, instead of the dairy-free, egg-free, wheat-free muffin I had made especially for him. They looked alike because I always tried to make the same things for Adam as the rest of the family so he wouldn't feel different. I did not realize then that my good intentions could have deadly consequences for my food allergic child.
When we celebrated Adam's birth in May 2000, food allergies were not on our minds at all. Our healthy son, delivered by C-section, was eleven pounds at birth. Adam's skin appeared red and rashy looking, but we were assured that newborns sometimes look that way.
The redness and rashes did not go away however, and when Adam was three months old, he was diagnosed with eczema—a chronic, itchy skin condition. For his first few months, the eczema was treated with steroid creams. At six months, Adam had a cold and we heard some wheezing, so the doctor sent us to the hospital for a test for RSV. (RSV is the acronym for Respiratory Syncytial Virus, the most common respiratory virus in infants and young children. For most infants, the symptoms are like those of the common cold, but the virus can be dangerous for infants who were born prematurely or have chronic lung problems). The RSV test was negative, but we were asked if asthma runs in either of our families (it doesn't). We learned that asthma, allergies and asthma are a known triad, which gave us a telling glimpse into our future.
When Adam was eleven months old, I began introducing milk products such as yogurt into his diet. I was preparing to wean him from breast milk to regular cow's milk, but whenever I gave him something with milk in it, he would develop a rash and sometimes even hives. The allergist we consulted used a skin test and one week later a blood test to check for reaction to major food allegens. We were shocked to learn that not only was Adam sensitive to milk, but also to eggs, peanuts, wheat, soy and oats. We were given a prescription for an EpiPen® in the event of an anaphylactic reaction, which could occur if Adam came into contact with any of these food proteins.
"What am I going to feed this kid?" I asked the allergist. So much for my tried and true kid's lunches of grilled cheese or peanut butter and jelly sandwiches, macaroni and cheese, and cheese omelets. Dinner was not going to be much easier without spaghetti, pizza or chicken nuggets. And what about eating away from home? Would we ever be able to go to a restaurant or eat a casual dinner at a friend's house? Most important, could we keep Adam safe? Suddenly watching a child at a playground munch on a peanut butter cracker became a stressful and potentially dangerous situation. We would never look at food the same way as we had before.
The next few months were confused and chaotic. We needed to come up with an arsenal of recipes that our whole family would enjoy that would be safe for Adam. We had to educate ourselves, and quickly, about such things as the correct use of an Epi-Pen®, how to read and properly understand food labels, and how to communicate with others the importance of avoiding particular foods around Adam. All of this had to be done while we struggled with emotions ranging from frustration and anger, fear and isolation.
It took months of reading books, talking to professionals, searching the Internet and meeting other families who deal with food allergies to ease some of our confusion. We discovered the Food Allergy and Anaphylaxis Network, and we tracked down some local stores and mail order resources where we could purchase some of the special foods we needed. We met with two nutritionists as we struggled to find ways to get enough calcium, protein and other essential into Adam’s diets. We experimented with many different recipes as we tried substitutions in old family favorites and brand new recipes with safe ingredients.
As we gained knowledge, those feelings of fear and frustration began to change to empowerment and optimism. We learned to carefully study every food label. Milk, for example, can come under many names, such as casein or whey. Eggs can be called albumin or livetin.
Cross-contamination brings many issues. A spoon that was used to stir the wheat pasta cannot then be used to stir the brown rice pasta boiling in the other pot. The grocery deli becomes dangerous—a “safe” meat could be sliced on a machine that had previously cut cheese or another product containing an allergen. Ordering French fries at a restaurant, even fries that only contain safe ingredients, is dangerous because other foods, such as chicken nuggets, may have been fried in the same oil. As a result, we don’t eat out as often any more, and when we do, we bring all of Adam’s food with us.
Fortunately, Adam has no memory of that ambulance ride last summer, although it is seared forever in my heart and mind. Now that we are almost two years into this journey, I can confidently say that Adam’s food allergies have brought many positive changes to our family’s life, diet, and overall health.
We eat much better than we did before, and we have discovered some wonderful recipes that I probably never would have tried. We have learned to focus on activities when we plan birthday parties, holiday celebrations and vacations rather than food. I have learned to speak up about Adam’s special needs and to educate others about food allergies. In so many ways, this journey has been good for us.
Copyright 2004 by Joanne LaSpina. This essay originally appeared in the March 2004 issue of Welcome Home. Joanne has a website to help other family in their journey through food allergies. Visit Food Allergy Assistant for more information and resources.