When my son was 10 months old, we started giving him some of the foods that you normally test with a baby.
Many of them went well; egg did not. He threw up and broke out into hives. In subsequent weeks, as we were trying other foods, he developed rashes and had other strange reactions. As we were a few short weeks from a big international trip, we insisted that the doctors run a blood test so we could see what his other allergies were before we left. We had no idea that we would find out that he was off-the-charts allergic to peanuts. We were given Epi-pens before we left on our trip.
The next several months were extremely stressful. The medical information was confusing: we went to an allergist who did a skin test, some of which contradicted the blood test. We did a second blood test since we learned that the first one was the incorrect blood test. The skin test results still contradicted the blood test but the allergist said to listen to the blood test results and to ignore his skin test results. Enormously frustrated by this response, we discontinued our service with him. The contradictions continued: we discovered that the numbers from the blood tests meant the likelihood of having a reaction but then were simultaneously told other things. Mostly what we learned was that the allergy world does not have any simple answers and that we would very likely not understand the ones that were available.
Without knowing more, we had to confront how to deal with the reality of the allergies. We banned all nuts from our house, got a baking book,
The Food Allergy Mama’s Baking Book: Great Dairy, Egg, and Nut-Free Treats for the Whole Family
and gave it out as presents to all the bakers in our family. For his first birthday, instead of a cake, he got chocolate pudding (which he gleefully splattered all over himself and the table). My mother made egg-free matzah balls at Passover, in addition to the matzah balls with egg. At Halloween, we let him give out pre-approved candy, rather than taking him trick or treating (later, once he realized that he trick or treat, we had to screen all the candy before giving it to him). We made a batch of cupcakes, made with tofu, to keep in the freezer for other people’s birthday parties. We introduced him to Italian ice instead of ice cream. We limited the places that we ate out at and even the items that he was allowed to eat off a menu. Epi-pens were distributed to all of his caretakers and they were trained on how to use them.
One of the hardest parts was advocating for him and not feeling guilty about being that parent or having that child. For me, it was a matter of shame because it had occurred to me that, during my pregnancy, I had eaten loads of peanut butter and trail mix along with two hard-boiled eggs every morning. I have been sure that his additional allergies to chickpea and sesame were derived from my penchant for hummus. I took the responsibility upon myself for all of his allergies and felt horrible. I surely didn’t want to admit to other people what I had done to my child and face the public reality of needing special accommodations for him.
We found ourselves apologizing when telling people about the allergies and asking them to keep their children’s peanut butter and jelly sandwiches away from him or to check the ingredients on a granola bar that was a child’s snack. It was a long road coming to peace with having to do it, but we needed to look strong about it, too, once we started telling our son about his allergies, even if we still felt awkward.
When he started preschool, we got him a Medic-Alert bracelet which he proudly showed his teachers. We supplied the school with Epi-pens and discussed the allergies with them. We awkwardly sent a letter to the other parents in the class explaining our son’s allergies and asking them not to send nut items with their children to school. Then we had to find a new allergist so he could get a flu shot since the flu shot contains egg.
Our son has found his experiences with the new allergist pretty fascinating (he, thankfully, does not remember the previous allergist). He asks a thousand questions about why they write on his arm with a pen when doing the skin tests and why they use tape to record the results on a piece of paper. When we went to get his flu shot this year, we read books while waiting, including one about a child who has a peanut allergy and has an allergic reaction after another child taunts him into interacting with peanut butter, prompting him to go to the hospital. In the book, the parent and doctor had conversations with the child about how to handle other pressures of being different. Emotionally, it seemed a little over my son’s head (maybe better for where my husband and I had been a couple years ago). However, later in the visit, I asked him if he had any questions for the allergist. He first said “no” and then came out with “I don’t like my allergies.” I said something sympathetic to which he responded, “I want to eat everything.”
I was shocked at the maturity of the statements. I was proud of him but also felt a little bad that he seemed more mature about the whole thing than I had. While we had gotten to a more sanguine place about it and had gotten comfortable advocating for his needs, it had taken us a couple years; he was 4-years-old and was already articulating his emotions about it. Despite my desperate desire to relieve him of all of his allergies, the hope I now cling to, which the new allergist has assured me will happen, is that he will outgrow the egg allergy in the relatively near future, making things a little easier.
As a sort of test of my theory, I diversified my diet when I was pregnant with my daughter. When she turned 1 earlier this year, she tested negative for everything. At least I learned how to spare one child, but I suspect I will always live with my guilt.