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Allergic Test Subject – Not!

Samantha Yaffe’s frank take on motherhood with allergies.

A few years back, we found ourselves between allergists. Our first one died a year after Lucas was diagnosed with peanut, tree nut and egg, and the second one was, well – to put it mildly – not a good fit.

After pulling a few strings, Lucas, Honey and I headed off to meet allergist No. 3 – a very reputable doctor, renowned for his allergy research.

I was feeling confident and partly excited as we waited the requisite 45 minutes in the hallway along with dozens of other allergics of all ages and stages. The wait continued for what seemed like another hour inside the good doctor’s office, a warmish atmosphere, with some kiddie toys on the floor and family photos adorning his desk.

When he finally arrived, the greeting was a bit curt, but I quickly launched into our story, which he seemed keenly interested in for about 40 seconds before the nurse came knocking. “Just a minute,” he interrupted, and left us again waiting in the room.

Ages later he returned and instructed me to resume, but this time he was totally distracted, his eyes affixed to the door. It wasn’t another minute until he excused himself again. After yet another in and out, a nurse finally ushered us back out to the corridor for some more quality waiting time, no explanation.

It wasn’t until the code blue sounded minutes later, and we witnessed what appeared to be every doctor, nurse and orderly in the hospital running down the hall into the room next to the doctor’s office, that we realized there was a real emergency.

At some point during the pandemonium, we and the rest of the allergics were moved to a waiting room around the corner, given few details despite a whirlwind of questions from the anxious lot of us.

Turns out, one of the patients we’d been sitting near in the hallway earlier was there for an oral allergy challenge. She was in her 20s, and I have no idea what she was being challenged with, but whatever it was, was bad, life-threateningly – maybe even terminally – bad.

To this day, I don’t know if she came out alive. I called the hospital the next day and the day after that to find out what happened, but of course nobody was authorized to divulge that information to me.

It was a scarring moment. One I will always remember and be reminded of when I hear the words “oral challenge.”

Same goes when I read about breakthrough studies where kids are being given small amounts of their allergen in an effort to desensitize them. I applaud the successes, of course, and I pray a cure is found sooner than later. But who are these test subjects? And more to the point, who are the parents who are entering their allergic kids into these studies?

I’m often asked about the likelihood of Lucas growing out of his peanut allergy or the potential for a cure. And I mostly respond that holding out hope for either of those miracles is self-defeating for me. It’s only a small percentage of kids who will outgrow these allergies, I’ll usually explain.

Besides, my survival/mama bear instincts tell me that Lucas will never qualify for an oral challenge or a desensitization study. I also can’t imagine ever inviting such risk into our lives, even for the greater good. Despite the medical community’s inability to test yet for allergy severity, I know from the experience of having to save my son’s life where he stands on the spectrum.

When I recently came across a newspaper article quoting a mother saying she would do anything to get her anaphylactic 8-year-old into a desensitization study even if it posed a life-threatening risk, I was floored. Like Lucas, this boy has had his share of emergency visits to the hospital and suffers from multiple food allergies. The article focused on there not being enough studies in Canada, which may be true, but I guess what struck me most is that there are parents clamouring to put their young children in such high-risk situations.

Our allergic kids aren’t living with a disease that’s going to kill them. It’s not like we have nothing to lose. Quite the opposite in fact. Our kids live in a world where it’s more like everyone else is carrying the deadly disease and it’s our job to keep them safe from it. Avoidance and vigilance is our chemo, public awareness and labeling our cure.

But don’t get me wrong, if there are parents out there willing or even eager to put their children forward in an effort to help find a cure, I am the last person who would blow the morality whistle. I’m just shocked and bewildered by them.

So back to the original question: Who would put their child at risk to help find a cure? Who would make the sacrifice so that my child could potentially live a risk-free, fear-free, allergy-free life?

Would you?