Click here for part 1 of my allergic history.
By this point, I had made it to 4 years old, and my allergies to tree nuts solidified.
The next few years of my life were a whirlwind learning adventure for my family. They trained me to ask whether food had nuts in it, and I notoriously even asked that question once when someone offered me a popsicle. But despite our care, I sometimes still had accidental reactions, and my parents still ran into trouble with doctors not believing them.
“Her throat does look a little raw,” an ER doctor once told them. “Maybe she has strep.”
“It’s not strep, she ate nuts at the church potluck and says her throat itches.”
“Well, let’s do a strep test anyway.”
Lo and behold, the strep test was negative. And why should we pay for a strep test when we’re in the emergency room for a very specific, known cause? ER doctors do have to be detectives, of course, because people don’t always tell the truth about what brings them in (when the reasons are illegal, irresponsible, or embarrassing, for example.) And I wasn’t visibly swelling up or losing consciousness. But by today’s standards, I should have been (and probably would have been) treated for anaphylaxis immediately.
Sending me out into the world was difficult, too. My mom did manage to get my epinephrine into the school nurse’s office, although there was no Food Allergy Action Plan to go with it, and who knew how many people would recognize the signs that it was time to use it? As frightening as it was for my mom to send me off, I scared my teachers as well. How were they supposed to deal with this child with a medical condition they’d never encountered before?
I left behind a few traumatized teachers, whenever something happened in class. My first grade teacher obviously thought she was being accommodating when she broke the class into two groups to make cranberry nut bread for Thanksgiving. One group would follow the recipe in its entirety, including nuts. The other group would leave the nuts out. My mom was against this accommodation, arguing that I needed to learn that I couldn’t always eat what everybody else ate, but the teacher and parent helpers said it was fine, they didn’t want to leave someone out.
The baking of the breads went according to plan, but then the teacher sliced up the nut bread to hand out to everyone else before she sliced my nut-free bread. Using the same knife and cutting surface. Cue the alarm bells. Cue also the teacher who got a crash course in food residue and contamination. (For decades, my mom would report running into this teacher in the grocery store, and the woman always recognized my mom. Some experiences burn faces into your memory for good.)
To be honest, I’m not sure we even understood the concept of allergen contamination before that. My parents might have known about it, but this is a milestone in my memory, when I realized that my food touching someone else’s food could cause a problem. The world didn’t respect the problem at the time, either. Certainly, packaged foods seldom bore “may contain” warnings when I was young. I’m not entirely sure when the transition occurred, because I wasn’t consistently reading the labels until my teen years, but I do remember being surprised at the new warnings that appeared on foods. Some of them declared that foods I’d been eating for years were dangerous to me, which caused no end of confusion.
Around the time of the first-grade incident, when I was 6 years old, I got a new pediatrician who also specialized in allergy. That meant I finally got skin testing for my allergies. They tested for a huge number of items, both food and environmental. In fact, there were so many items that they had to split the test into two days because my six-year-old back wasn’t big enough.
I hated the tests. I had to lay on my stomach for what seemed like eternity while my back itched like mad. My mom encouraged me to scratch my stuffed stegosaurus’s back where I itched. I was worried about what they would find, and especially worried that they would tell me I was allergic to chocolate.
My test results were surprising, and revealing of how many false positives skin testing can yield. I had positive results, 4s, in fact, (scale of 0 to 4 that is still used today) to all of the tree nuts, which was entirely expected. I also had a 4 for peanuts, which I had been happily–and safely–eating since the age of 2. And I had a bunch of 2s and 3s to all sorts of random foods including peas and beef, all of which I had been safely eating. I had no reaction to egg by that time. Or, to my relief, to chocolate.
I’m grateful to my parents for their level-headedness after those tests. Some parents might have cut all of those foods out of my diet, but mine didn’t. Why cut out a food I was having no reaction to? The doctor wanted to perform food challenges on all the foods I had positive results for (other than the nuts) to see if we could provoke a reaction at high doses. My parents declined those challenges. If I wasn’t reacting to the normal-sized portions I was getting at home, then what was there to worry about? The allergist asked, “What if she’s eating at someone else’s house, and they give her a huge portion and make her finish her peas? Don’t you want to know if there’s a threshold?” My mom said, “Who does that?”
This doctor also prescribed me with inhalers for my asthma, which made treatment sooo much easier. He also convinced my mom to start treating my asthma at the start of a cold, rather than waiting for asthma symptoms to occur. “By the time she starts coughing,” he said, “she’s down to 50% lung capacity.” And he gave me a daily inhaler, to keep my lungs more stable even when I wasn’t sick.
So my life became a little more stable by 1987-88. Stay tuned for the final installment on Friday!