Sometimes my three-year-old daughter will look at all the adults she sees out in the world as they eat their ice cream and nuts and sesame-seed bagels and egg-laced cupcakes and ask me:
“Mommy, when I’m a big grown up woman, can I eat allergy food too?”
It’s a reasonable deduction. She has young cousins and little friends with food allergies, but all the big people she knows can eat whatever they want—therefore, getting to eat “allergy food” must be a benefit of being an adult.
I’ve always told her “No, I’m sorry sweetheart, you’ll probably ALWAYS need to be careful about most of your food allergies.”
I tell her that I know lots of adults who are allergic to things like peanuts or shellfish or nuts. And I remind her that her Zadie (grandfather) carries an EpiPen just like her to keep him safe from bees.
Until last week, I was sure this was true. We’ve been told sesame, nut, and mustard allergies are usually for life, but that there’s a good chance she could outgrow the eggs and milk, or at least eat bits of them in baked form. And for the last few years I’ve read about oral immunotherapy (OIT) holding a promise to create a precious margin of allergen safety… but also heard that it is currently slow, one-allergen-at-a-time, hard-to-access, potentially dangerous and still not exactly a cure, just the induction of a temporary tolerance—a hard-won tolerance that could go away after a period of allergen avoidance. (And not something that I felt I wanted to pursue personally for my daughter at this time).
When people hear about how severe and life-threatening and well, LIFE-THREATENING and severe and restrictive (and did I mention life-threatening? severe! should I say that louder?) my daughter’s food allergies are, they often say, in a hopeful tone: “Well, she’ll probably outgrow them, right?”
I know they are trying to make it better, but things are NOT better, so I say, firmly: “No. Probably not. Except MAYBE the milk or eggs.”
Because I haven’t really had the mental space for a hope for the future that might be dashed, what with all my label-reading, cross-contamination avoiding, lunch-packing, safe-cupcake-baking, eczema-lotion-applying, asthma-spacer-puffing, EpiPen-carrying, 504-plan-writing and living in constant fear and anxiety of my daughter accidentally ingesting a microgram of sesame, nuts, eggs, milk or mustard. I am too focused on the near and the now—on keeping her safe at the playground this weekend, at birthday parties this summer, at kindergarten next year.
And then I read this book, and my entire paradigm shifted:
Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure by Henry Ehrlich (of the wonderfully informative website Asthma Allergies Children: A Parent’s (Web) Guide and the book of the same name) is the thrilling account of the research and development of a breakthrough new potential cure for food allergies, asthma and eczema pioneered by Dr. Xiu-Min Li at Mt. Sinai: Food Allergy Herbal Formula (FAHF-2 for short, or B-FAHF-2 for the latest refinement of the treatment).
As the book title implies, Dr. Li has a background both in Western medical science and Traditional Chinese Medicine. The research and clinical trials that led to the development of FAHF-2 follow the gold standard of Western scientific research — double-blind placebo-controlled trials and all. But the herbs and mushrooms that are the raw materials for the treatment come from Dr. Li’s knowledge of Traditional Chinese Medicine (TCM).
This blog post is less a detailed review than an endorsement (really, go read it now!) and a meditation on what Dr. Li’s innovative research could mean for the future of people with severe allergic disease, especially food allergies, eczema and asthma. But first, a few thoughts about this wonderful book (SPOILER ALERT!):
- You will need to put on your serious nerd hat for this one. Ehrlich does a fantastic job of distilling reams of research reports and medical journal abstracts into layman’s terms and an exciting story—but it is a story full of scientific and medical concepts and acronyms (so many acronyms!) that were new even to me, the obsessive food allergy mom. So don’t be afraid to slow down, reread, take notes. Or you might start confusing your IgE antibodies with IgG antibodies and basophils with… OK, I’m still trying to figure out what basophils are.
- Of course, I didn’t slow down at all.
- Instead I tore threw it like a good novel, and as I began to approach the end, unable to blink and rapidly thumbing to the next page of the eBook, I realized this wasn’t an account of early-stage research, or speculations on far-future applications. That actually, there might even be a happy ending already. In my daughter’s childhood.
- The book is about what is possible—and is starting to happen, right now. About kids who participated in the phase 2 efficacy trials and can now eat peanuts and ice cream. About a teenage patient in Dr. Li’s private practice who formerly went into anaphylaxis just from being near nuts in a grocery store and now goes on school trips to Europe and eats nuts and peanuts.
- This book could be about my child, someday. Or yours.
So. When I put the book down it was late and night and I was shaking. I closed my eyes, and an odd little quiz popped into my head. Choose your own allergy adventure!
You’re at the playground with your small child. You hear the tell-tale sounds of the ice cream truck approaching. The children return with treats in hand, their cones dripping dairy protein and fragments of nuts all over the swings and slide and ground. You:
- Grab your wailing kid in terror and make a swift exit, hoping you have some non-dairy frozen dessert in the fridge.
- Stay at the playground, but tell her she’ll have to wait to get dessert until you get home.
- Smile and hand her a dollar.
Our family life now is all about 1—strict avoidance, at all cost. A world of NO. NO you can’t eat that. NO you can’t do that. NO DON’T TOUCH THAT WASH YOUR HANDS RIGHT NOW! NO you can’t touch cats, or dogs, or anything furry or feathered. Just NO!
Jumping in fear at the smears of hummus, drips of yogurt and pistachio shells that lie in my daughter’s path in the world like little landmines waiting to explode. Limiting that world to be as small, as regimented, as controlled as it needs to be for her safety…
But what if it could be 2—relaxed avoidance? What if we didn’t have to worry about minute cross-contamination, mild contact, “may contain traces” or emailing every single company from which we purchase food to make sure their products don’t contain undeclared stray shards of sesame or wayward mustard grains?
What if we could let her dine in select, reasonably careful restaurants? Eat chewy plain bagels from a New York bagel bakery as long as they weren’t directly coated with seeds?
I think of food allergy tolerance sometimes as an invisible forcefield. Right now my daughter’s forcefield is very thin—smaller than a single sesame seed. But what if it was 10 sesame seeds thick? An accidental mouthful of walnut-studded cookies thick? I cannot describe without lots of jumping up and down and squealing in excitement how much that would change our lives.
Or, dare I imagine, 3—non-avoidance? What if my daughter had… NO ALLERGIES, ECZEMA OR ASTHMA AT ALL.
What if she didn’t need the medical bracelet, the EpiPen bag, the constant vigilance and necessary paranoia about absolutely everything, the hours of daily eczema and asthma treatments, the cabinets full of medications and bandages and nebulizers and tubing and…
What if we didn’t have to worry about food allergy bullying when she gets older? Or peer pressure to take “just one bite, it couldn’t hurt you”?
What if we could visit relatives or friends who have cats or dogs (which is almost all of them)—for more than an hour or two, without having to dose the kiddo with Benadryl, cover her in protective clothing, hose her down afterwards, throw all of our clothes in the hamper and wipe the dander off our shoes?
What if she could just be a kid—just herself? And not the kid with the allergies, and the rashes, and the restrictions, and the endless doctor visits, and…
But I’m getting ahead of myself. The FAHF-2 research is exciting—and the patient stories are AMAZING!—but it is still being refined and explored. Still, I think I am finally ready to clear some room in my head to dream.
And maybe someday, I’ll have a different answer for my daughter than NO.