I was at a birthday party approximately 6 years ago for one of my son’s friends. While chatting with the some of the moms in his class, I must have had my back turned when little cups of snacks were passed out to each hungry 5-year-old.
I broke out into a cold sweat and my heart started beating in my chest loudly. I was about to yank the cup from his hand when I saw from afar it was from a box of cereal he had eaten countless times before and I knew was safe for his egg, tree nut and peanut allergies.
I don’t know what it was, call it “momsense,” but it kept gnawing at me that I did not actually read the box – so I went over to the garbage and took it out. I almost fell over as I read the words on this special holiday edition of the cereal “May contain peanut flour.”
I immediately grabbed Josh and assessed him ― he looked OK. I decided to proactively give him Benadryl (as per our food allergy action plan at the time) and watch him. I also called the company who basically told me there was probably no peanut flour in the cereal but the product was made on a manufacturing line with another cereal that did have peanut flour in it.
I could feel the eyes of all the other moms on me and, as the party went on, Josh had no reaction. I even caught wind of low murmurings of maybe Josh isn’t that allergic after all. I tried to explain that the product probably did not have peanut in it and that if it did, he could have had a life-threatening reaction.
I remember vividly the looks the other moms had ― as if to say “maybe it’s her.” It was my first taste of the skepticism other parents can sometimes feel toward a mom and her child with a food allergy.
I know it is hard for other folks to truly comprehend what a food allergy looks like ― they look at my happy healthy child and don’t have the same picture as I do in my head. The photo shared below is what he looked like at 2 years old AFTER treatment for anaphylaxis and returning home from the ER after he had a tiny bite of my peanut butter and jelly sandwich. Let me try to paint a picture of what he looked like WHILE it was happening.
As soon as he took a bite, his lips, where a smudge of peanut butter had stuck, swelled to almost double their original size. Large angry hives formed next under his armpits and quickly spread throughout his body. His tongue began to swell and he began clutching his throat like he was choking. To me though, the scariest symptom was seeing the light behind his beautiful big brown eyes began to fade. All this happened within minutes.
Luckily, at age 1, he had been diagnosed with an egg allergy so we had an Epipen in the house. The symptoms reversed immediately upon using the Epipen and we went to the ER.
We may seem like “crazy” food allergy parents at times ― monitoring food, hovering at parties and playdates, or asking a million questions before letting our children get in your car. But here’s the kicker. If we get it wrong, we don’t get to hit the reset button.
Every food allergy reaction is unique and different so we don’t really know what can happen until it does.
Food allergies are a disease that is widely misunderstood by the general public and even by folks who think they only have a “mild” food allergy. Dr. Hemant Sharma, the Clinical Chief of the Division of Allergy and Immunology and the Director of the Food Allergy Program at Children’s National Health System in Washington D.C. drove home the point recently when he told a reader in Allergic Living Magazine that most people who have died due to food-allergic anaphylaxis may have had prior reactions, but rarely were they very severe.
There are so many variables that dictate how a food allergy reaction will progress. Even taking a painkiller for a headache can alter the threshold of a reaction. The take-home message is your mild previous reactions CANNOT predict whether future reactions will be fatal or near fatal.
I was recently at a FARE (Food Allergy Research & Education) research retreat in Washington D.C., when a young man with food allergies gave me a lump in my throat as he spoke about the ever-present fear that hangs over the head of a food allergic person.
I also was struck by how much I identified with a mom who described herself as feeling as if she is constantly seeing her child on the edge of an impossibly steep cliff, hoping this time her child does not fall off. There are great burdens felt by all who are affected by food allergies.
It’s not always as simple as avoiding or refusing food. Labeling can be confusing and even wrong resulting in food recalls due to the presence of an allergen. Just this past week, several lots of Epipen auto-injectors, the medication used to treat anaphylaxis, were recalled.
It’s equally important to remember that we are all fallible. Just like I did at the birthday party so many years ago, we can all make mistakes. If peanut flour had been in the cereal mix, my story may have had a very different ending.
In addition to receiving airline testimonials on No Nut Traveler, I sometimes get stories from food allergy folks with pictures of their reactions. Thankfully, the young man in this picture is fine today. But try erasing that picture from his mind.
Even more difficult, try erasing that picture from his mother’s heart.
That is what I want you to understand. Our fears are not baseless and neither are our precautions. Please be kind and empathetic to parents, children and adults who live each day knowing they are just one bite away from an emergency room visit or even worse, death.