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)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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 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.
Footer
Kathryn @ Mamacado says
I relate to so many things in this post as a parent of a child with multiple food allergies. From “mom-to-mom healthcare” to the feeling of relief (“my shoulders dropped about an inch”) when realizing the waitress, teacher or babysitter has experience with and understands food allergies. I will pass along this revealing and important post!
Susannah Fox says
Thanks, Kathryn!
The same teacher announced at the start of the school year that there will be no individual birthday parties in her classroom. Every other year, I have collected the birth dates of every kid, emailed their parents a week in advance to inquire about their plans for the classroom party, then baked or brought a treat that approximated what the birthday kid was going to bring in (often something from a bakery, picked up that morning, whereas I have to cook from scratch). I told my son’s teacher that when she made that announcement it was like she gave me the gift of 21 free hours — and that’s a low estimate!
The silver lining is that I’ve gotten to know all the kids in my son’s grade — and I’ve become a pretty good baker!!
Brett Alder says
What a great post. Thanks for sharing such a personal and moving story, Susannah! Hard to imagine having an anaphylactic risk hanging over your head all of the time. Raising kids is tough enough as it is!
Susannah Fox says
True! Anaphylaxis is the wake-up call you never want to receive — and awareness of mortality in a little kid is very tough to see.
But we are all more resilient than we imagine. You reach a “new normal” (sometimes multiple times, as new allergens are identified) and you just keep going.
I often think about my friend Laurie Strongin whose son Henry was born with Fanconi anemia, a devastating rare disease. She, along with her husband and other son, made Henry’s hospital room their home. They filled it with joy and laughter — and they never wanted to leave because that would mean that Henry had died. They reached a wonderful “new normal” there in a room measuring 8×10 feet.
Listen to the fourth segment of this interview if you want to hear more about Laurie’s story:
https://susannahfox.com/2012/03/16/mama-birds-catherine-fairchild-calhoun-and-laurie-strongin/
Craig Canapari says
What a terrifying position to be in as a parent. Thank you so much for sharing this powerful story. Many of the children I care for at work have to have similar talks with their teachers and caregivers– and never know how they will respond.
Wendy Sue Swanson, MD, MBE says
I agree– terrifying to be a parent baseline — even more scary to feel there are daily threats to safety when children are out of arm’s reach. Susannah does such a beautiful job, inviting us in and letting us see how she’s honed such powerful skills as a health advocate and mom. I’m thankful to keep imploring families to share their vision with each other. I know in my bones that his mom-to-mom/dad-to-dad health care really can help us improve health care and children’s lives.
Susannah Fox says
I have found that being part of an online support group has been key to my ability to hone those skills, to focus on what’s important (essentially: GIVE THE EPI), and to commiserate about the feedback we get from people who don’t understand our lives. If you have patients who seem like they could use a hand, encourage them to find a support group.
I wrote this essay months ago as a way to process the emotions I feel after every single training session. It was important for me to acknowledge, if only to myself, that I needed to be ready for that wave. Sharing it has made me realize that I could pay forward all the advice and support I’ve received, so other people can be ready for their next training session and the inevitable catharsis afterwards. We have to keep those presentations fresh, even raw, so that we can transfer the weight of responsibility onto that babysitter, teacher, etc.
Thank you for the forum to share it!!
Jeffrey B says
Over 15 million American’s have a food allergy. Eight foods account for 90 percent of all reactions: milk, eggs, peanuts, tree nuts, soy, wheat, fish and shellfish (peanuts are the most common with 3 million ) I wonder why “food allergies among children increased approximately 50% between 1997 and 2011.” Studies show the number of children living with peanut allergy appears to have tripled between 1997 and 2008
Although food allergies account for more than 200,000 emergency department visits per year, thankfully it is rare to result in a life-threatening situation although it does accounts for a huge cost to the US health care system (25 billion a year). https://www.foodallergy.org/document.doc?id=194
There is however a lot of hype around peanut allergies and after the famous peanut butte kiss of death incident in Canada some docs resorted to smearing peanut butter on kids arms to show the parents it wasn’t the mere whiff of it that was dangerous.
Glenn Glenn D. Braunstein, M.D.Vice President of Clinical Innovation, at Cedars-Sinai wrote a great article in Huggington Post on this last year. https://www.huffingtonpost.com/glenn-d-braunstein-md/peanut-allergies_b_2885819.html
Getting Past the Hype About Peanut Allergies
About 9,500 children each year are admitted to hospitals for some form of food allergy.
Thankfully death by peanut is extremely rare. While estimates range from about 150 to 200 deaths a year from peanut allergies, reporting is spotty and not required, and the Centers for Disease Control and Prevention officially documents only 13 deaths (including six adults) between 1996 and 2006.
Relax – Once you have the facts you will realize that the risk to most children is in fact very very low given the millions living with it (140 to 390 kids drown in pools each year but we don’t ban swimming) If you to do the research it can help with excessive anxiety in the parents and avoid frightening and ostracising the child. Get the facts. You really don’t need to panic if your child has a food allergy. (each child is unique and none of this is based on the bloggers child)
Susannah Fox says
Thanks, Jeffrey — great resources.
“Death by peanut” is an almost comical phrase, isn’t it? I take your point that it is extremely rare. You might be interested in an earlier discussion on this blog in which we discussed the food allergy equivalent of “Godwin’s Law” — that every public thread must eventually include someone who says that the threat is overblown. One proposal is to call it the Numerator Law: the moment when someone asserts that the percentage of people affected by X is so small as to be not worth the level of attention being shown that particular issue. I appreciate your caveat at the end that each child is unique — indeed, we are on the wrong side of the statistics gathered at the population level.
Here’s the earlier discussion:
https://www.wendysueswanson.com/four-hours-on-a-school-bus/
Again, thanks for your comment. May every family indeed get the facts, not panic, and meet the challenges they face, based in reality.
Wendy Sue Swanson, MD, MBE says
Hi Jeffrey,
I think you bring up an obvious tension in the health care communication space: the value of sharing messages for individuals (while using narrative wed with evidence to capture their experience and help support their journey in health care) versus the value of creating content aimed for a population at large. On Seattle Mama Doc, there is a blend of both –and that blend is very intentional.
Many people (myself included) feel like outliers when we’re sick or worried about being sick or suffer from a chronic health problem. When in reality, as you point out, most of us live under the bell curve.
I think food allergies and the potential for life-threatening anaphylaxis is a unique health problem that has individual import but relies on community action, compassion, and decision-making. Although most children won’t die from an exposure, it’s our GLOBAL responsibility to protect those that are vulnerable to an episode of life-threatening reaction while also putting it in context. At first glance, this can look like fear mongering. But at deeper evaluation, this kind of mom-to-mom advocacy and idea-sharing is essential to making this a healthier, more compassionate, and united population protecting those that need our help.
Roni Zeiger says
Jeffrey, I think there’s an important distinction to be made here. Do you need to panic about your child? Almost certainly not. Do you need to raise your awareness in order to better understand and care for the community around you? Almost certainly!
Ashlee Adams says
Thanks for the information, Jeffrey. Agree with other commenters that panicking may be unwarranted and unhelpful — but a great way of alleviating that worry is by being prepared and armed with the right information. While your point about low incidence of peanut allergy mortality is very much true, we do fall into the usual trap of population health statistics: Individual children have different risk profiles, and an “average” risk across the population isn’t necessarily descriptive of your individual child. Extra precaution may well be warranted for some families, but because population health data has such a big denominator, parents are left to figure out their own course of action, estimate risks, and take precautions on their own.
As with any condition, of measured magnitude or not, increasing awareness and access to trustworthy information and resources is key. Beyond providing only statistics, how could we offer more actionable guidance for parents and the community? What are the questions you need to ask of your child’s school or summer camp? As a restaurateur, what rules do I need to comply with to be food-allergy friendly? I’m fortunate to not have a life-threatening allergy, so am not as familiar with current resources available, but I am curious… Beyond FARE, which other organizations are actively promoting awareness or is the onus solely on parents to seek and vet information, and then educate their communities?