Recently, my mister and I conducted an informal, educational meeting all about peanut allergies for some close friends and family. We’ve been dealing with this issue for three years now, so we’ve come to consider ourselves fairly expert on the topic (I wrote about living with Big’s serious peanut allergy here before). During the meeting, we showed this informative video “An Introduction to Managing Food Allergy” by The Consortium of Food Allergy Research; we shared this horrifying story of how a mother nearly lost her son to a peanut reaction; we gave out copies of How to Read Food Labels from The Food Allergy & Anaphylaxis Network (FAAN); and we gave a demonstration on how to administer an EpiPen using this emergency plan (also from FAAN) designed for schools.
Our audience had some great questions that we were happy to answer. To us, that meant that they were really listening and really getting it. My mister and I wondered to each other why we hadn’t done this earlier. Rather than assuming that everyone would just do as we asked regarding our son’s allergy and then being upset time and time again when we felt that the risks weren’t being taken seriously, we had finally made a good faith effort to make sure that everyone we love — and who love our Big — understood and bought into the seriousness of his allergy. Now that they understood, we expected them to comply with our guidelines: Big cannot have access to anything containing peanuts or tree nuts or anything that is processed in a facility or on shared equipment with peanuts or tree nuts. We were doing the only logical thing to keep our son safe. Surely there would be no objections.
But then, out of left field, came a question we’d never been asked before: “But how allergic is he really? What’s his severity number?”
Severity number was not written in any of our handouts. It was not mentioned in the video. Number? What number? In three years, our allergists had never assigned Big an allergy severity number. Apparently one of our audience members had come armed for bear, having boned up on peanut allergies using the oh-so-reliable, never-tell-a-lie internet. During the meeting, my mister and I felt too blindsided to even muster up a response, so the question of severity number was left unanswered.
I stewed for a while, angry that we had to justify our decisions to those we loved most. Why was this even up for conversation?! We are Big’s parents and this is what we feel needs to happen to keep our child safe. Our son could die. Do our loved ones really want to take that risk? Were they really arguing with us about this?!
After I calmed down a bit, I took to the interwebs myself to see if I could track down the elusive allergy severity number. Lo and behold, I found lots of info — RAST numbers and wheal sizes; skin-prick tests and circulating antibodies; scales that went from zero to six and others that measured in the hundreds. Through all the dizzying and contradictory data that I found, one thing seemed clear: when it comes to allergies, there’s just no tellin’.
To make sense of what I was reading, I contacted Dr. Jeffrey Factor, co-director of the Food Allergy Clinic at Connecticut Children’s Medical Center. He’s the doctor at Connecticut Asthma & Allergy Center who initially diagnosed Big and who’s seen him every year since then. I felt comfortable interviewing Dr. Factor because I knew him and because I highly value his opinion.
I asked Dr. Factor to explain the concept of allergy severity level. While he said that skin-prick and blood tests are helpful in initially diagnosing food allergies (especially in patients who’ve never had an allergic reaction), these tests do not tell you about the severity of a potential reaction. A scale from one to six might help you determine the likelihood of a reaction, but not how bad it might be. That’s why peanut and tree nut allergies are “predictively unpredictable” — you can’t count on them to foresee what might happen in the future.
“But for friends and family, those who don’t deal with the issue firsthand on a daily basis,” I asked Dr. Factor, “Wouldn’t it be helpful if we could just give them this straight up, black and white number so that they would know how to behave around people with allergies?” It seemed like this is what our audience member had been seeking, a number on a scale so he could act accordingly.
“That number has no basis in fact,” Dr. Factor replied. “It gives only a false sense of security.” Instead, we should continue to behave as if Big is very allergic and will have a severe reaction. That’s the only way to be safe, especially since his one and only reaction to date was fairly severe.
So now that I feel that my fact-finding mission on allergy severity levels is complete, my mister and I can sleep easier knowing that we did and will continue to do what is best for our son. It doesn’t matter if you think we’re crazy or overprotective. We do not debate when it comes to Big’s safety. If you want to be part of his life and ours, respect the rules we’ve put in place to keep him safe. If not, we’ll be sorry to see you go.