When our son was diagnosed with food allergies, we were absorbed into a new way of life, learning the folkways of keeping him safe. We labeled every jar and can in our pantry and fridge so that anyone who visited could see at a glance what was safe (green) or unsafe (red). Like Curtis Sittenfeld, who wrote about learning to live with a child’s allergies in The New York Times, we came “to know certain products so well that when they get a new ingredient, it’s like a friend getting a haircut.”
When he was little, I trained every babysitter, teacher, and camp counselor, honing my 20-minute message to deliver maximum impact. And I joined an online community, which continues to be a source of incredible wisdom, like this recent post from Molly Moynihan in response to a fellow parent who is facing a daunting challenge — two children with two very different allergen lists:
“Actually, we are all managing risk. And there is a lot written about risk. One concept is called cascading failure and it was important in the first space missions. If you think of anaphylaxis as a so-called catastrophic failure, then in risk parlance, it generally requires several things to go wrong. That is why they used the concept of fail safe or redundancy.
It was our experience that our worst episodes always involved multiple failures of controls. (I was tired and did something differently, that caused another mistake which resulted in a third one.) Typically, you need three things to go wrong before you have catastrophic failure. That’s a reason problems are more common on vacation. So, if we saw one thing going wrong, or being different, we reduced the risk on the next things. You can apply that to two children with multiple allergies by building in more redundancy. For example, eat out less, use one shelf for one child and one shelf for another. So you have systems that tend to lower risk. Check labels three times. Once when you buy, before you put away and before you eat, etc.”
As our son gets older, we are widening the circle of people we count on to keep him safe. He is adventuring out to new schools, new friends’ houses, and new camps. At age 12, he participates in the safety trainings and the conversations with chefs and waitstaff. Imagine our delight when we met one chef who herself has food allergies and therefore studied his list with careful attention.
This year we added photos of the Epipen and antihistamine tablets to the hand-out we give to teachers and counselors, because we don’t want there to be any barriers to someone’s understanding of the dosage. We also added photos of some of the trickiest labels we have encountered so we could explain why “soy lecithin” is safe, but “soy protein concentrate” is not.
We try not to overwhelm people with information, but it is hard to know how our efforts are received. People are polite. They nod and smile. And we walk back to our car, leaving our child in their hands.
Recently, we sent our carefully-crafted food allergy hand-out to a new camp, at TechShop DC-Arlington. That same day we received the following email in reply:
“Thanks for the thoroughness of the info about your son’s food allergies. As someone who has had Type 1 Diabetes since I was 10, I remember my mom putting together similar informational packets for my teachers, and always having kits with Glucagon & glucose tablets in the event of low blood sugar. I really appreciate having all of this detailed information to be able to share with his instructor, Dave. Dave usually eats lunch with his students, so we can make sure he will be there to keep an eye on your son when he is eating, and to make sure that he checks in with him occasionally to make sure he is symptom-free.
I will be at the front desk tomorrow morning- I like to meet the parents and kids and be there to answer any questions. If you’d like to talk about this further, or check in about anything in particular, I’ll be there when you arrive. You’re free to come in a little earlier, too, if that helps. I should be out at the desk starting at about 8:30 am.”
I wept. For all the work we did on that document, down to the choice of font, we could never be sure that it had struck home, that it would ever be enough. But here was someone who understood, who thanked us for “all this detailed information to be able to share.” It reminded me of the preschool our boys attended, which approached food allergy as an opportunity for everyone to learn from and embrace.
Our son had a whale of a time at that camp and I had a renewed sense of safety in my community, the community of people who have been through something similar and want to give back. Thank you, thank you, thank you.
e-Patient Dave says
Boy oh boy oh boy oh boy. What a gold mine this post is.
First, ringing loud and clear is big honkin’ patient & family engagement. I will refer clients & audiences to this post at times and ask: “Is your organization ready to be a full partner with a family that’s this engaged?? Can you hear the knowledge they’re sharing with you?”
Second, I’m thrilled about the information on risk. Two years ago the wonderful Jim Conway encouraged me to attend a conference on HRO (high reliability organizations), where I learned so much in two days.
Third, in your thoughtfulness about the instructions you prepare and share, I hear personal responsibility (for being clear but not burdensome) and empathy for the reader who’ll receive them. In this, your work precisely matches what I learned at HRO about the design of airplane cockpits, where enough information to achieve safety must be presented, but only in a way that the user can actually absorb in real time while doing their job. How many of us have been trained in this? Not many, but you must do it.
And as a pervasive background issue, in the last few years it’s become clearer and clearer (through books like The Remedy, Emperor of All Maladies, and The Laws of Medicine) that medicine went through a long era of ignorance followed by a century or two of biology ruling the roost, and we’re now in an era where it’s clear that sometimes things other than biology and chemistry make all the difference. And that’s where sometimes there’s resistance from organizations that are now firmly focused on the bio: they simply haven’t been trained to understand additional disciplines like this.
Finally, of course, the patient-safety-and-quality / Lean part of me is just in awe of the conscious attention that (for instance) the two-kids mother puts into every action. Every provider who achieves that, and every family member and caregiver who achieve it, have my deepest admiration.
Oh, and yeah, peer-to-peer healthcare FTW!
Susannah Fox says
As always, you bring deep experience and (my favorite) evidence to the conversation.
This is absolutely a peer-to-peer healthcare FTW situation. A big part of our success so far as a food-allergy family is thanks to the guidance of my online community and our extended network of offline friends who have been through similar stages. We are very fortunate to be friends with the mom of an older FA kid who attends the same sleep-away camp. She had run all the traps and could advise us on how to set things up in advance and when we arrived. Plus the older kid is now a counselor who can look out for our son. As I’ve said before, quoting Paul Wicks, this kind of advice, online or offline, is a gift that can never be repaid.
I appreciate your point about how biology and chemistry are only part of the equation of health. That is certainly true in the case of FA. Diagnosis is essential, as is understanding the treatments available. But the day to day (to day, to day, and so on) of our son’s journey has more to do with his ability to navigate kitchens, dining halls, friends’ houses, and the temptation of “just one bite” of a yummy-looking dish or dessert. That Sisyphean grind describes a lot of people, including the T1D camp counselor whose note means so much to us.
e-Patient Dave says
Your mention of T1D reminds me again that I’ve long felt (before I knew any people with diabetes (PWD)) that the PWD is the ultimate “engaged patient,” as in 24/7.
I’m sure you can readily imagine why they eventually said #WeAreNotWaiting and, when they saw an opportunity to solve the problem, created #OpenAPS. Imagine if you could write 180 lines of code and put the FA problem pretty much permanently into safety.
Lucky kid to have such amazing parents :).
Susannah Fox says
Aw, thanks 🙂 Just doing our best.
I just wrote to another mom on Twitter that I had to share this stage with my friends here, had to share about this force field of “I see you” that we extend to each other when we show empathy.
Roni Zeiger says
There is SO much healthcare being described here and I’m loving another implicit point: there are no clinicians in this story. Most of healthcare does and will happen outside the patient-clinician interaction. I say that not to minimize the importance of that interaction, instead as reminder (to myself also) that most of the juicy stuff happens during the rest of the time. So we better get better at planning for that, measuring that, learning from that.
e-Patient Dave says
And that reminds me of potent comments by two super-e-patients –
Sara Riggare’s potent illustration of one red dot (for one hour) out of a year: dave.pt/SaraRedDot
And sometime in the past year Hugo Campos said “I don’t WANT to engage in my health – I want to engage in my LIFE,” which is perfect … I can’t find where I saw it, so I just asked him on FB.
Lynda Mitchell says
The National Academy of Medicine report comes out today that emphasizes (among other things) the need for patient counseling and for community education and public awareness. There’s still so much to do to keep children safe and healthy. We sadly heard of another young life lost to food allergy just last week.
Susannah Fox says
If others (like me) missed this event, here’s where you can learn more:
Report Release Event: Committee on Food Allergies: Global Burden, Causes, Treatment, Prevention, and Public Policy
And anyone with food allergies should check out Lynda’s fantastic site: