Parents who will stop at something
Happy Monday, sapiens.
Today, we’ve got something a little different: an essay on parenting and my son’s allergy treatment. Quick reminder that this is not medical advice—just me reflecting on my personal experience.
As always, thank you for being here!
7 min read
My husband and I are sitting on the couch at the end of the day, laptops resting on our respective knees. Between us is a stack of papers, provided by my three-year-old son’s allergy clinic earlier that day. My son is allergic to tree nuts (cashews, walnuts, etc.), and has been doing a treatment called oral immunotherapy (OIT). The papers detail a new treatment protocol for us to consider.
Our eyes are glued to our screens, scanning, the silence occasionally punctuated by a quick tapping of the keyboard.
We don’t have to make a decision about this now, my husband offers. The doctor said we could get back to them in a few weeks?
Right. I agree. So, here’s a February 2023 paper with retail dosing equivalents for common allergens, and let’s see, 300 milligrams is…half a teaspoon of walnut butter?
Oh interesting. My husband says, glancing at my screen. Can you send that to me?
We fall back into silently scanning.
Alright, I start again. Here’s one: “A practical focus on multi-food oral immunotherapy.” It says outcomes are similar for single vs. multi-food OIT.
We pause, both thinking.
Okay, my husband starts. So, taking a step back, if we go this route, how would it work? He grabs the stack of papers and starts flipping through them. We’d mix the walnut butter into apple sauce, and then…a 5 milligram increase each day…so we’d use some kind of syringe to measure it? And it's a 32-day cycle with, let’s see, 18 days of updosing…and then 14 days of maintenance. And we’d do the walnuts at the same time as the cashews?
I recite the doctor’s proposal as best I can, cross-referencing the papers. The treatment protocol will involve more precise measuring and mixing of foods, more carefully-timed exposure and monitoring at home, more time, more appointments.
But years from now, a better chance of tolerating the foods he’s allergic to. A chance of improving his safety and quality of life.
It’s…a lot. I conclude, and repeat, more to myself than him, We don’t have to decide this now.
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My three-year-old is one of the roughly 5% of children in the U.S. with a nut allergy. If he eats certain nuts, he will go into anaphylaxis. We never leave home without an EpiPen.
Years ago, an influencer I follow on Instagram posted about her nut-allergic child’s success with a treatment called Oral Immunotherapy (OIT). At its most basic, OIT involves exposing patients everyday to small, increasing quantities of the foods to which they’re allergic. The goal is desensitization—they can accidentally ingest a small amount of the food without dying—but the hope is a stronger response, one that changes the immune system to the point where they no longer have a life-threatening reaction.
The treatment appealed to us. Having a child with a food allergy can be terrifying, and the idea that there was something, anything, we could do about it was intriguing. We read up on it—the first of many late-night reading sessions—and decided it was worth a try.
Then came reality.
Our current allergist said they could do it. We got on their waitlist. Later we learned they could not do it for his age and particular allergens. We solicited recommendations for new allergists. We called offices, faxed papers, hand-delivered files that could not be faxed, got on a new, 9-month waitlist for a speciality clinic 40 minutes away. Then skin pricks and bloodwork, more waiting, and then, finally, the hard part. The treatment.
Each day, we give him a small dose of cashew powder. It must be at the same time everyday, with a meal, and followed by two hours of close supervision to monitor for a reaction. During those two hours, he cannot do anything that would substantially raise his heart rate (e.g., going to the playground, taking a hot bath, carrying out a high-speed Octonauts rescue mission) due to increased risk of a reaction. Every two weeks or so, we travel to the clinic for an afternoon, to attempt a higher dose and monitor for a reaction.
The goal is to work up to one teaspoon of cashew powder. We then continue this dose everyday for a minimum of 6 months and possibly, from my understanding, forever.
OIT is a relatively new treatment, reflecting a quickly evolving understanding of how to prevent and treat childhood allergies. It is, in my opinion, a medical miracle.
It is also a lot of work.
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We’ve been doing this version of OIT with my son for 7 months now. Seven months of organizing our days around micro-spoons of cashew powder.
Of blocking off full afternoons for doctor’s appointments, and dropping everything to squeeze in extra ones when they call with a last-minute cancellation.
Of coordinating dosing with babysitters, never leaving the house without cashew powder and dosing spoons, feigning excitement to “airplane” the dose into his mouth, and feigning calm when a hive appears on his cheek.
I am absolutely not complaining. The primary emotion I feel about OIT is gratitude—that we live in a time when this treatment exists, and that we are one of the lucky few with access to it. And to be clear: with our children having just a few allergies, and no medical complexities or serious health issues, I know we won the parenting lottery. So many others face challenges far bigger, far scarier, than ours.
When the opportunity arose to start OIT, it was barely a decision. Of course we would do everything in our power to give our son the best chance of a life where allergies do not interfere. Where he (and we) could have some peace of mind, where he could live a long life of going to restaurants and traveling and trying new foods without fear.
But as the treatment goes on, there are new decisions to make. Do I cancel that work meeting for a last-minute appointment, knowing a new dose now will shorten the length of treatment by a few weeks? Do I skip that activity with my younger son to prioritize my older son’s treatment? Do we cancel that weekend away because he’s starting a new dose, and what if he has a reaction while we’re gone?
And now, do we start on a new protocol—introducing another nut, with a more complex dosing procedure, knowing it will consume more of our time and energy, but increase the odds of a faster and more effective outcome?
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On social media, you often come across stories of those superhero parents who will stop at nothing to help their children. To set them up for success, to make their lives easier, to give them the best possible chance of a long and happy life.
What you do not hear are the stories of parents who stopped.
The stories of parents who decided that the tradeoffs were too great. That they needed to prioritize their other children, or their careers, or their sanity.
When there is always more you can do as a parent, and more feels like a close synonym to better, how do you know when it’s too much? How do you know when you’ve done enough?
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My husband and I are still sitting on the couch. He’s holding the papers with one hand and running the other through his hair, squeezing his fingers together so the hair stands on end. I’m squinting my eyes at Figure 2 in another randomized controlled trial, willing the data to somehow make the decision for us.
You know, I think things like this are going to come up a lot in our parenting, my husband muses.
He says what I’ve been thinking. That we obviously love our kids more than anything in the world, but just because we can do more, does it mean that we should? How much do you sacrifice to give them the chance of something a little better? Surely you cannot actually stop at nothing. There has to be a something, at some point, that stops you.
Where do you draw the line? He asks.
We’re no closer to an answer.
A quick survey
What did you think of this week’s Techno Sapiens? Your feedback helps me make this better. Thanks!
I really appreciated this post. I think it’s something our society needs to hear more. There are trade offs for any significant effort you make as a parent, and sometimes it feels like people only look at “what you get by doing this heroic effort” and don’t consider the toll it can take on the parents, their work, and their other kids. Those impacts can be really significant and need to be considered against the “heroic effort.” It’s really really hard to balance everything, especially if there’s more than one kid. I hope you can figure out a balance that works for your family, and hope the treatment is successful!!
It's so hard and it feels scary! We have two kids with nut allergies, and NGL, we've had a few trips to the hospital. But our kids are teenagers now, we've traveled with them all over the world, and they're quite good at asking questions about ingredients and avoiding potentially dangerous foods.
In the end, your job as a parent is to raise kids capable of navigating life — including threats to their wellbeing. Suppressing the danger of this threat will never be quite enough, so it's OK to focus on helping them develop the skills to manage it. OIT will continue to advance and maybe in a decade it will be way easier!