photo (43)When it comes to food allergies, expert parents are uniquely-positioned educators. They know the tricks of the trade and the ways to the oasis of safety in a culture that has yet to fully embrace supporting children with unique medical needs. Over the years in practice, it’s parent-food-allergy-experts that have taught me the greatest new lessons I now pass on routinely to patients. Marrying the life-threatening nature of food allergy to the concepts of strict avoidance to the use of medication to treat anaphylaxis will never be enough when supporting children, their families, and their schools. The essential advice may be locating the inspiration families need to be staunch, relentless, and tireless advocates for their children. Even when uncomfortable. It’s Food Allergy Awareness week and some just-in-time allergy info has arrived.

This post, this concept, this advocacy, this is Mom-to-Mom health care. Enjoy this post from the ever-brilliant mom and researcher, Susannah Fox (her bio below)

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Once a year, I give a high-stakes presentation in front of a single audience member: my son’s teacher. I have 20 minutes to teach her how to save his life.

I need to explain the science of food allergy, list all of his many allergens, accurately describe the symptoms of anaphylactic shock, instill an appropriate sense of urgency and responsibility with one or two frightening stories, but also build her confidence so she does not tune out or give up prematurely.

I must unpack the medicine kit and explain each item, list the circumstances in which the kit should leave the classroom, explain why a child having an allergic reaction should never be left alone, demonstrate the use of the emergency medication, and let her get a feel for the epinephrine injector by sticking it in a grapefruit, which approximates the real target: the fleshy part of a child’s thigh.

I will close with a few words about social inclusion. If we have time, or if I sense an opening or need, I will talk about bullying, both overt and subtle, since that is becoming more pressing as my son gets older and children get meaner.

During each stage of my presentation I stay alert to my audience’s reaction: a flicker of annoyance, a blank look, a nervous glance away from the awful or the new. I gauge what is needed – a smile, a joke, an illustrative story, or a grim warning. Sometimes it has been necessary to use what my children call my “I have a gun” smile or to bring my lawyer husband to the next meeting so we are all clear on everyone’s rights and responsibilities.

But today it went well. She shared that her own child has had food allergy issues. Not true anaphylaxis, but enough to allow me to simply underline, not explain, the importance of allergen avoidance. I think my shoulders dropped about an inch. We are in this together.

She also said “of course” in just the right way when I mention how nice it would be to not deliberately and knowingly serve party food that could kill my son. “Thank you,” I replied, with a catch in my voice, as I think about how many people react with indifference or even vitriol to this request.

I like to think I have gotten pretty good at this after so many years of training relatives, babysitters, and teachers. I inhabit my role. I relive our own sick moment of realization that our son could die if we did not take immediate action. Six times. I assure people that they will know anaphylaxis when they see it and that there is no downside to administering the epinephrine.

At the 20-minute mark we punch in each other’s cell phone numbers. We shake hands and say goodbye. I walk out of the building and, every time, I burst into tears. How did I do? The reviews won’t come in until the end of the year when the med kit is returned to me, having never been used.

Susannah Fox photo

 

 

 

 

Susannah Fox studies the cultural shifts taking place at the intersection of technology and health care. Her research has documented the social life of health information, the concept of peer-to-peer healthcare, and the role of the internet among people living with chronic disease