When Milo had a food challenge to soy last year, he talked about it incessantly for the month leading up to it. He was the only one in the family who was still allergic to soy so before the challenge the boys spent a lot of time talking about all of the new things they may be able to eat in the house. His brothers wished him luck. Milo promised them he would be able to eat it. He truly believed that he would be. He wanted it badly enough that surely the challenge couldn’t go any other way. He was eager to try it. He was confident. Milo isn’t one for losing. In fact, to say that he has a penchant for winning would be a gross understatement. In his heart, he believed he would fly through this challenge and triumph over soy.
Milo has FPIES to soy. FPIES stands for food protein-induced enterocolitis syndrome. This syndrome is one of the spectrum of gastrointestinal allergic diseases that causes an allergic individual to have potentially massive vomiting and diarrhea about 2 hours after ingestion of the offending food. This can lead to hypotension and shock. The treatment is not epinephrine but rapid administration of IV fluid. The challenges for FPIES are typically done in a hospital setting with an IV in place. Milo’s challenge went well at first. He scarfed down some soy pudding and soy chips, and we waited. All seemed fine until shortly after the nurse took the IV out and he started vomiting and vomiting. It was at that time, the allergist and nurse declared it a failed food challenge. And they used that word too, fail. We all did. After all, I was trained to look at it that way too. A food challenge is something you pass or fail. He failed. And he heard that loud and clear. His shoulders hunched over and he was quiet. He didn’t feel well.
A few days after Milo failed his soy challenge, we were doing some running around. As he passed me to get into the car, he called himself a loser. I had never heard him talk that way or use that word before. When I asked him why in the world he would say that about himself, he reflected back on the soy challenge and said, “Well, Mommy, when you fail at something, it’s the same as losing so I’m a loser.” Oh, no. He had been feeling as though he was a failure, a disappointment to me, to himself and to the family, ever since that soy challenge a few days before when his shoulders hunched and he grew quiet. We used the term “fail” with nonchalance, as medical jargon, but it was medical jargon that broke the heart of a five year old and we didn’t think twice about using that expression. He failed the challenge. But he heard something quite different. He heard that he was the failure.
Merriam-Webster dictionary defines a challenge as “the act or process of provoking or testing physiological activity by exposure to a specific substance; especially : a test of immunity by exposure to an antigen”. Of course, allergists would call a food challenge a challenge. During a food challenge, we are presenting an antigen (food protein) to the body to see if the immune system reacts to it. Medically speaking, the result of a challenge being referred to as a pass or a fail also makes complete sense. The immune system either passed the challenge by tolerating the antigen introduction or it failed the challenge by reacting negatively to the antigen introduction. It’s black or white. It’s pass or fail.
But there is another definition for the word challenge as defined by Merriam-Webster, “a summons that is often threatening, provocative, stimulating, or inciting; specifically : a summons to a duel to answer an affront”. My guess is that a child’s understanding of a challenge is more similar to this definition than the former. A challenge is a duel, a match, a game. It’s a matter of winning or losing and directly relates to the ability or the inability to do something. It is effort dependent.
When we call the result of a challenge a “pass” or a “fail”, we might as well tell the children that they won or lost. The term “pass” is victorious. It’s celebratory. It means you rose to the occasion. Just hearing that word makes you want to stand up straighter, stick your chest out. There is a pride that accompanies this word. Failing feels very much the opposite. The word itself makes you feel sad and ashamed. To fail at something indicates that there was a lack of drive or desire to be successful. Maybe you didn’t want it badly enough. Failing begs the question, what if I would have been better prepared? The word “fail” has broken many a heart.
Hearing my son refer to himself as a loser because his body was not able to tolerate soy was a very poignant and painful experience for me. He took the results of this challenge personally. He felt as though this result was a reflection of himself, his desires, his talents, his imagination really. He had pictured the soy challenge as a success, he imagined what he and his brothers would do and what they could eat if he passed. He felt a burden and responsibility to pass this challenge. And when his little body began vomiting, he felt like he had ruined everything. He couldn’t live up to his imagination. He already felt like a failure and then we confirmed his thoughts by calling the challenge a “fail”. A dagger to an already breaking heart.
Since this experience, I approach a food challenge a little differently. First, I call it what it is. I tell my children that a challenge is a way to see if the cells in your body, which you have no control over, react to the presence of a certain food or not. Instead of labeling the outcome of a food challenge as a pass or a fail, I simply call that what it is, too. The result is whether your body is able to eat a particular food or unable to eat it. It’s about the body and not the spirit. It’s about the cells, not the desire. The result of the challenge is what your body does, not what you want it to do. It’s effort independent.
Thinking of a challenge in this way may ease a little of the pressure a child feels when they are undergoing a food challenge. It minimizes the feeling that any amount of effort or passion or desire impacts the outcome. Often children with food allergies already feel that they are at fault for the food difficulties within their family and so they certainly don’t need more guilt associated with food. They don’t need to feel like if they just wanted to eat it more or hoped harder that things would be different.
Most importantly, before a food challenge, I simply reinforce my love for them. I remind them we will love them either way and will not blame them if they are still allergic. No one will be mad at them. Although it is hard not to get excited about the prospect of no longer being allergic to a food, we try to reign in that excitement prior to the challenge. We let them know that if they are able to eat the food, it will be great to have another food that is safe. If they unable to eat it, we talk about the fact that we will continue to live the great life that we are living and will try again in the future. Either way, we love them just the same.
At our most recent challenge, I cringed as we again heard the word “fail”. I obviously don’t blame the allergists for using that term but I would encourage those of us who perform food challenges for our patients to use the “f” word in our charts but not as much with the children. It’s just one little word. Leave it out. There’s so much at stake here. Food challenges leave a child feeling vulnerable and out of control already, let’s not make them also feel responsible for the persistence or resolution of the food allergy. That’s too much pressure. Let’s give the children a break and avoid that label. Perhaps saying, “Your body is unable to eat peanuts yet” or “Your body is now able to eat peanuts” is better way to put it. No guilt, no burdens, just a matter of fact. Because, let’s face it, the children know when they start to feel sick that they have failed the food challenge. They feel it in their mouth, their tummy, their skin, their throat. They don’t need to feel it in their heart, too.
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