I have lots of annual appointments each year: physicals, eye exams, skin checks with the dermatologist, etc. But there is only one appointment that I look forward to with great hope and anticipation and at the same time fills me with dread and fear. It’s my little men’s annual food allergy testing. This year was no different.
I find that it’s hard to balance the hope and faith that God can perform miracles with the reality that the testing may show that there has been no change. If there’s no change then I know that we have to make it another 365 days until they can be tested again. That’s another 365 days that we have to make it without exposure to their allergens. And another 365 days to work really hard at keeping them reaction-free and alive.
I always pray for a miracle but for these appointments I prepare for the worst. I know this may sound contradictory, but it’s the only way I can protect my heart, mind, and ultimately my sanity if the results come back to be the same or worse. The first year following my little men’s diagnosis, I made the mistake of assuming that they would be cured. After all, I knew lots of moms who had babies with suspected food allergies, due to blood being found in their stools. And almost all of their children had outgrown those allergies by the time they turned one. We, of course, did not. The reality of what my little men’s diagnosis meant for our family hit me hard. I became irrational and feared everything outside of our home and it took me months to regain my sense of security and newfound lifestyle as a food allergy mom.
Ever since that first retesting appointment, I promised myself I’d never again allow myself to hope too much. This year I was heading towards our annual testing fully prepared to receive the news that there had been no change. However, our trip to Disney World in early October left me with a glimmer of hope and the possibility that perhaps we had, in fact, outgrown some of our allergies. Why? Well we had zero reactions during our entire trip to and from Disney World (9 days). And when I say “zero” reaction I mean zero everything…not even a single hive, which is something we generally have just by taking a trip to the grocery store.
After that trip it was almost as though I had no control over the amount of hope that began to bubble up inside me. I had dreams that we went in for our retesting appointment and after they performed the skin test, every item they tested my little men for was negative. So, when the time came for our actual retesting, it was hard for me to control my premature emotions. Our pediatric allergist, Dr. Frederick Leickly, whom we love checked the boys over and we chatted about what we’d be testing the boys for during this visit. Our oldest had a known egg allergy so that’s all we were testing him for. Our youngest had a known dairy, soy, peanut, tree nut (including coconut) and sesame allergy. We had him tested for all of those plus egg. He had been tested for egg when he was about a year old and he tested negative. However, because our oldest has an egg allergy I don’t generally keep eggs in the house and I never bake with them. So he’d never had eggs. We desperately wanted to add them into his diet but not until he had been tested first.
They performed the skin test on both of my little men at the same time. My youngest had the most pricks (16) and he was incredibly brave. It didn’t take long before a couple of the spots on his back to swell up with hives. And which one was swelling the fastest? EGG! After the 15 minutes passed, Dr. Leickly returned to read the results (ranging from 0-4+). My oldest still tested very positive (4+) for egg. My youngest tested very positive (4+) for egg, dairy, cashew and sesame. He tested somewhat positive (3+) for peanut and a little positive (1+) for hazelnut and pistachio. AND he tested negative (0) for almond, brazil nut, coconut, soy and walnut! So although I was disappointed with his newly diagnosed egg allergy, I was excited about the possibility that he might be able to add back almond, coconut, and soy into his diet. This would open up the door for new “non-dairy” products ranging from milk to yogurt to ice cream and many other items that he hasn’t been able to have due to the presence of soy (Ritz Crackers, Earth Balance Butter, Pop Tarts, Oreos, etc.). Now I realize that these aren’t the healthiest of reasons to add soy back in but they sure would make life a bit easier from time to time. AND I’ll take what I can get. Can I get an AMEN?!?!?
We followed up the skin test with blood work that won’t be returned to us for several weeks. This will give us a better idea of their allergies. If the blood work numbers reflect the skin test results then hopefully we can schedule a food challenge or two by the end of the year.
Despite the appearance of good news, I still felt disappointed following the appointment. I cried off and on for several days as I grieved the life that I desperately wanted for our family, a life that at least for another 365 days we won’t have and a life carrying 4 EpiPens that I’m so ready to be rid of. I’m finally rounding the 5th stage of grief and beginning to accept that, at least for now, my little men still have food allergies and I’m still a food allergy mom. It’s one of the many things that make my little men unique and it’s one of the many titles that they gave me when they came into this world. Although my little men still have food allergies, God is good and has answered many of my prayers. Our family is blessed and I’m anxiously awaiting the results of their blood test to see what new adventures we’ll embark on this year.
For more about our food allergy story, click here.
Stay tuned for Part 2: The Blood Results.
What about you?
How do you approach your retesting appointments?