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FARE Blog November 12, 2020

Why I’m Hoping for Better Food Allergy Testing

Better food allergy testing would ease the anxiety of introducing new foods to a child and avoid first-time reactions to a food.

Guest post by Nancy McNulty

Food allergy testing

Nancy McNulty is a mother of three boys. Her experience with food allergies began when her youngest son, Owen, was diagnosed with a milk allergy at four months. As he got older and started trying new foods, she quickly learned of his other food allergies. Nancy is passionate about raising awareness for food allergies and helping those who recently were diagnosed with a food allergy.

As a parent to a child with multiple food allergies, there are many things I wish for – a cure, a reason why, a promise that he will never experience another reaction. But I also hope for better testing, which would ease the anxiety of introducing new foods to a child and avoid first-time reactions to a food. The standard practice for testing is a skin prick test, which does not guarantee accuracy. The only way to know if you truly have a food allergy is to ingest the food. 

We have three boys. Only our youngest son, Owen, has food allergies. Owen will be four in November, and I unfortunately have seen him have nine anaphylactic reactions in the past three years. He’s allergic to milk, egg, sesame, peanut, tree nuts and banana, but there are still many foods he has not tried. Two of these reactions occurred days after a negative skin test to the allergen.

The first time I gave my son epinephrine was three years ago, when he was just weeks shy of his first birthday. He was still a baby, not even walking, and without words to explain what his body was feeling. I had to steady my shaking hand as I held him down and pinched his thigh muscle with my other hand, just as the allergist had showed me days before, when he tested negative for milk at a routine allergist appointment. The skin prick for milk at this appointment came back as zero, no measurable wheal, which was supposed to mean he was not allergic to milk, while his skin prick for peanut, the reason for the appointment, came back positive. At the same time, Owen was failing to thrive and had not gained weight between 9 and 12 months. As we were struggling with his inability to gain weight, the news that he had already outgrown his milk allergy came as a blessing. The allergist told me, “Go home, give this boy some ice cream and fatten him up.”

So that is what I tried to do. It was a Friday. Owen woke up from his morning nap and I eagerly handed him an 8-oz bottle of whole milk. After finishing, he began sneezing. I called my husband, who was at work, and he reassured me that he was fine. He, like me, assumed my nerves were raw from just experiencing his peanut reaction. 

With my three boys, we headed to Owen’s gym class. I had to pull over twice on the eight-minute drive to town to check on Owen because he was coughing. When I merged onto the highway, I had to ask my 5-year-old if he was breathing because I could not see Owen’s face in his rear-facing car seat. Thinking back, I wonder how I didn't realize he was having an anaphylactic reaction, but the allergist’s words of encouragement to “fatten him up” kept playing in my head.

Within minutes of arriving at the gym class, Owen projectile vomited across the carpet. I stripped him down to his diaper to look for the tell-tale hives I’d seen in previous reactions, but there were none. As I frantically tried to get in touch with his allergist, the hives appeared and I knew. As the instructor called 911, I laid his tiny body down on the gym mat and gave my son the only thing that could save him.

I carry with me vivid memories from that day. Asking a mom at the class, who happened to be a nurse, if he was going to be okay. Leaving my older two children in the care of strangers as I went into the ambulance with Owen. Looking out the back window of the ambulance and seeing my mom’s face filled with worry as she rushed into the gym class to collect my older boys. Seeing the reaction return at the hospital, his ears growing to be half an inch thick, his body so swollen it was unrecognizable. The fear taking over me as he screamed from discomfort. The prayers I said as I rocked him after his second dose of epinephrine. 
The first allergist Owen saw at 4 months old tested only for his milk allergy, explaining the chance of false positives. He told me it’s better to try foods at home and have the EpiPen on hand. It sounds so simple, but when it’s your child, nothing is simple.

I’ve seen my child’s eyes roll back in his head as he screamed from pain and shivered uncontrollably. I’ve seen him throw up and have diarrhea for hours. I’ve seen him slur his words and go limp. I’ve heard him gag as his throat began to close. Of all these reactions, only three were accidental, which means six were when he first tried a new food or tried a food after a negative skin test. Six of these reactions could have been avoided if there was a method that could, with 100% certainty, predict a food allergy.

I carry no blame towards the allergist that told me that Owen was no longer allergic to milk. I saw the test results myself. Instead, I carry the understanding that our community needs better testing methods. More accurate methods of testing could prevent many traumatic experiences and give parents much more comfort in trying new foods, especially in a child that shows signs of multiple food allergies.

Food allergies are on the rise. From 2007 to 2016, there was a 377% increase in emergency care procedures for anaphylaxis caused by food. Severe food allergy reactions send someone to the emergency room every three minutes. Each day, more families are hoping for better food allergy testing.

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