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When our kids are young, we feel like we have some sense of control over their allergies. After all, they cannot easily prepare food for themselves and they rely on us to do it for them – so we carefully avoid all allergens and intolerances. But sometimes our little ones of a certain age may become curious about the food they’ve been told to avoid their whole lives. What happens then? Read on to hear this mom’s story and learn how they coped, a great read for all allergy parents!
Managing Food Allergies, Asthma and Eosinophilic Esophagitis
By Kendra (bio below)
Our family was introduced to the world of life threatening food allergies when Paul, now 8, stopped breathing during dinner at just 7 months old. I explained to the allergist that Paul always had a rash of some sort, and nothing we did affected the daily wheezing. We learned that he was allergic to egg, peanut, cat and dog. Five months later, another half-dozen food allergies were identified. His symptoms improved for a few months. Then he started having rashes and trouble breathing every time he ate. With guidance from the allergist, we continued to remove newly identified food allergies every few months. By the time Paul was 3 ½, he was allergic to every food that he had ever eaten. All nutrition came from an elemental formula which is broken down to amino acids. The absence of actual food proteins ensures that there is nothing for the body to identify as an allergen.
Most people cringe at the idea of giving up all food, but for Paul it brought relief. For the first time ever, his skin was clear. The rashes disappeared, and the chronic wheeze could only be heard with a stethoscope. The change was amazing! After a short period of transition, Paul stopped expressing interest in food altogether. He was, it seemed, content without food in his life for nearly 3 years.
That all changed one Wednesday morning. I was thrilled that, at just 6 and 4, Paul and his brother were considerate enough to let me sleep past sunrise. Then Paul came into my room. His face was flushed and slightly swollen. He proudly explained that his brother had taught him how to eat an apple. To the kitchen we went for Benadryl! Little Brother had counted 8 apples in the fruit bowl before bed. There was now one apple core, claimed by Little Brother, and 7 apples in the fruit bowl. Each of those was missing a single bite. I spoke with Paul about the importance of not eating food and he promised not to do it again. Beyond watching for further symptoms, I didn’t give his indiscretion the incident much thought.
A few hours later, the boys were drawn to a cake that was sitting out on the counter. They used their fingers to taste little bits of the frosting. The flushing and facial swelling again resolved with Benadryl. We had another chat. This time I used my Mommy Voice. Paul assured me that he wouldn’t do it again.
Late that afternoon, Paul snuck into the kitchen and ate frosting by the spoonful. I caught him red-handed and yelled at him to stop what he was doing. This time, the rash, flushing and facial swelling were accompanied by a persistent cough. Another dose of Benadryl worked, but not as quickly as it did earlier. In retrospect, I realize that this was an Epi-worthy reaction. We were lucky that the Benadryl turned out to be enough!
By this point, I knew that we had a serious problem on our hands. I trashed the cake outside. Then I rearranged the kitchen so that all food could be stored in the cabinets. I kept thinking “out of sight, out of mind!”
Young children sometimes put their food allergies to the test! Read this mom’s story. @eczemacompany #foodallergies
Thursday morning, the boys helped themselves to some apple chips that could be reached by climbing onto the counter. I did not immediately dose with Benadryl this time. Instead, I marched Paul to the mirror and made him acknowledge the flushing and facial swelling. My fear escalated as he told everyone we saw that day about the yummy apples and frosting that he had tasted. That evening, I raised all food to the very top shelves and moved all furniture that could be used to climb onto the counter. I put bells on their bedroom door to alert us to any movement overnight.
I awoke Friday morning to Paul vomiting in his sleep. This was a sign of the delayed reaction that goes with a flare up of his EoE, another allergic condition that is triggered by food allergies. Never have I been so thrilled for my child to be sick! Paul’s doctors were on vacation, but we were able to see the allergist’s Nurse Practitioner. She gave the boys a lecture about the danger of eating known allergens. They promised not to do it again. I wanted to believe them!
My alarm was set for early Saturday, but the boys were up even earlier. This time they got into the refrigerator and helped themselves to some cheese. I was awakened by the sound of vomiting. Paul was flushed, rashy, swollen, and gasping for air between coughs. This time a hefty dose of Benadryl slowed the progression of symptoms, but did not stop or reverse them. I administered epinephrine and other emergency medications while my husband dialed 911. Then I carried Paul out to the driveway to wait for the ambulance. This gave me the benefit of natural light to better monitor skin symptoms. I also wanted him lying on a flat surface, just in case CPR became necessary.
While I was at the hospital with Paul, my husband installed locks on the cabinets, and a refrigerator alarm that was loud enough to wake the dead. Sadly, we had to remove the alarm because it deterred us from opening the door to get our own food. So we installed locks on the doors leading to the kitchen instead. A few days later, we caught Paul stacking his toys in an attempt to reach the locks!
When asked why he was suddenly so intent on eating food, Paul said that he just wanted to know what it tasted like. He had clearly outgrown his acceptance of the elemental diet that was required to address his many food allergies! We scheduled him with a psychologist, hoping that she could get him to understand what we could not. She told me that was not her job. Her role would be to serve as a safe adult who would hear his thoughts and feelings. She would be aware of his medical treatment plans, but she was not in a position to create or modify them. Upon request, she would facilitate discussions between Paul and me.
In the 2 years since Paul went on his binge of allergens, he has learned to trust his psychologist. I have come to see her as the most important member of his medical team. We go to her office every week so she can help Paul work through the difficulties of living with chronic medical conditions that affect every part of his life. He shares information with her that he is not comfortable divulging to others, and he knows that she won’t tell me unless his safety is at risk. With her help, Paul is able to see things differently. He can now recognize that there is good that comes with the bad. He may not be able to eat like other kids, but he can enjoy holidays and parties through activities and traditions that are not food-based. He has friends that he would never have met if it were not for his EoE.
Paul continues to be tempted by the allergens that surround him. Our kitchen gets locked up when we are unable to directly supervise him. However, Paul knows now that it is okay to talk about the temptation to eat allergens, and I am better equipped to help him resist the urge to put his life on the line for a taste of food.
Bio: Kendra is the mother of two boys with asthma, eczema, food allergies, environmental allergies and eosinophilic esophagitis (EoE). You can read more about her experiences in Life With My Overachieving Bunch.