Our new allergist, although limited in his knowledge and treatment options by the bounds of Western Medicine, is also, to his great credit, pretty open-minded; he has another patient, a five-year-old, who’s ‘outgrown’ eczema, as well as multiple nut allergies—this is, statistically, an unlikely event—and avoided albuterol asthma treatments for years thanks to TCM doctors in New York (this boy’s mom called me yesterday, and we’ll meet with their family in the coming weeks to learn more about their story). He also has solid instincts, opinions, and—most usefully—interpretive skills, around this whole business of testing. Although I didn’t know it at first, this is just the medically-minded guy we’ve been looking for. (Yeah, I said it).
I was hesitant to subject Kaspar to countless blood draws as we did last year, when we hunted desperately (and with questionable oversight— the first allergist we saw lacked the above-mentioned skills entirely) for foods Kaspar could safely eat. The up side of having run those tests, however, is that we now have a lot of baseline info against which we can measure subsequent results. Kaspar’s numbers on last year’s tests came out markedly high; even our new allergist remarked, in looking over the records, at the levels of Kaspar’s nut, legume, and egg allergies: Not good. But he was optimistic around some of the others, and suggested we do skin tests for wheat, corn, oats, and some veggies.
Conflicting opinions abound regarding skin versus blood testing accuracy, and I questioned whether skin testing would be useful, given that we’d started with blood tests last year—why switch things up now? But this allergist handled my questions deftly and respectfully (he figured out pretty quickly that I’m savvy with this stuff and expect him to work with us, not to regurgitate some all-purpose SOP); he said that while skin tests do sometimes turn up false positives, they can impart a fairly reliable sense of whether a person’s system will react to a food upon ingestion, without running the risk of anaphylaxis in testing. Kids with eczema, too, regularly turn up blood test numbers that are all over the map (we knew this, and found it frustrating last year: how could we tell what was really a problem if the numbers were probably whack?). This allergist said there’d be no point in skin-testing, say, peanuts, since those results were so very high and pretty much guaranteed a bad reaction—especially since we’ve already landed in the ER once-- but some of the mid-range foods from last year’s tests would be worth taking to the skin first in order to get a sense of whether they’re really problematic, with the express goal of expanding Kaspar’s gastronomic options.
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This prompted me to ask around (leading to our CO doc), and do some crash-course reading/cooking (loving this, and this and this). I got a sense of some of the most common foods and spices that Ayurvedic treatments employ, so when we compiled a short list of foods for Kaspar’s skin testing-- with the allergist-- I included a few requests based on our upcoming Ayurvedic treatment plans.
Drum roll please? Kaspar can safely consume cinnamon! Basil and black pepper are also a go. Turmeric wasn’t available in the standard skin-testing repertoire, but I’ve given it to him in increasingly ample pinches, and he hasn’t reacted; I’m calling it good. The skin tests showed wheat to be a huge no-no . That’s no problem. Garlic is, surprisingly, also not gonna fly. But the most exciting—to me, anyway-- skin test result showed coconut to be a-okay. Which means I can slather its oil all over my kid, and feed him its milk and its meat (I love coconut). I daydreamed in pregnancy of massaging my new baby, and was equipped with an infant massage DVD, as well as organic lotions and oils to soothe and nourish his skin. Of course, massage (and all of those products, however mild) weren’t in the cards for eczema-covered Kaspar, and although I’ve long since let go of my reluctance to apply petroleum-based products— it took us a year to discover Vanicream as the one moisturizer that didn’t aggravate his situation—I’ve known (and not been pleased about this) that they actually impair the skin’s ability to balance and hydrate itself. They’re a temporary fix. Coconut oil, on the other hand, deeply hydrates and repairs the skin. Daily warmed-oil massage is also an Ayurvedic staple. So now, at two years old, Kaspar’s recently begun luxuriating in a nightly massage, followed by a warm bath, more oil, and then bed. And his skin looks fantastic. (He’s also a newly dedicated fan of sweet coconut rice. And who isn’t?).
A few of the skin test results indicated to our allergist—and this is where I appreciate his experience, and his trained eye—that we should follow up with blood tests before making a judgment call. Corn and oat, for example, elicited a reaction on his skin, but to a lesser degrees than wheat did. He suggested that if the blood tests looked promising, we conduct in-office food trials, which is to say feed Kaspar those foods in the exam room, with Epi pens at the ready, before declaring them safe for sure. Again, it’d be stupid to try this with a peanut (definite emergency), but banana, for example-- which cleared the skin test completely but used to make Kaspar puke and break out in hives-- is probably worth a shot. Tomato also cleared the skin test, but our doc noted that with fruits and veggies, the body can react differently to something when it’s cooked versus raw; he suggested we start with ketchup at home, and, if that was fine, try a raw tomato trial. (Kaspar loved the ketchup, but it’s turned him pink all over three times in a row… we’re not going to bother with a raw tomato just yet).
I’ve previously felt decidedly suspicious of these doctors and their testing, which is, as you can see, more of an art form than a reliable science (and allergists are not, in my experience, generally artistic people, if you know what I mean). I’ve wondered what the point is in testing at all if both blood and skin tests can yield false results either way, and if people who turn up test numbers of 1 with a food can go into anaphylaxis after eating it, while others who turn up higher numbers are fine. These are the disclaimers listed on food trial consent forms, and also the facts patients (or, in this case, their parents) have to dig and pry for in the face of test-obsessed docs (a la last year). This recent experience, however, and our growing relationship and collaboration with our new allergist, have opened my eyes to the way in which he (with tests in tow) is a useful and indispensible member of our team. I’m not withdrawing all previous criticism on Western medicine— particularly on its institutionalized form and function—but I am professing a certain new-found appreciation for the more intelligent members among its ranks; even variable information can be helpful in the hands of someone who’s willing to make some educated guesses based on the big picture, and take some measured risks.
Anyway, we started rocking the coconut, put the ketchup aside, and headed to our local lab for a blood draw a few days later (I was itching for info, but wanted to give Kaspar a break). The results came in yesterday. Our doctor feels corn and oats are worth testing via food trial in-lab, along with banana; those numbers have all come down significantly since last year. But even more encouraging, so encouraging it chokes me up even to write it down, is that Kaspar’s peanut and lentil numbers have each dropped from a 70 (guaranteed 9-1-1 call) to a 40 (still a definite danger-zone figure, but we are seeing a definite drop, people. This is the direction we’ve been hoping for, and working toward). The doctor called me directly to tell me this news, noting that cashews and other nuts still clock in at scary-high counts, but saying for certain that the overall theme here is Kaspar indeed seems to be ‘outgrowing’ his allergies, bit by bit.
That mom I spoke to this week, the one with the five-year-old TCM success-story son, said her kiddo still turns up a positive blood test for peanut, but his skin test was so negligible that they carried out a trial, and discovered he’s also ‘outgrown’ this previously life-threatening allergy. I asked her whether she thinks it’s the Chinese herbs that did it, and she said, “Well… we’ll never really know,” but her son’s improvement has been so profound (and unusual)—and her experience with teaming up their TCM doctor (a leading researcher at Mt. Sinai hospital in New York, where Kaspar was born), and the allergist here in Austin so positive-- that she took the initiative to reach out to us. She said her husband was at first skeptical of getting their son going on TCM, but has since jumped completely on board. There’s no question that their son’s improvements have been head and shoulders above those taking place in the larger food (and environmental) allergy-afflicted population. They’re not planning on stopping with those herbs any time soon.
Aaron has been supportive and open-minded in terms of our pursuing TCM, and even NAET (which I’ve mentioned before in this space… It was weird, but we tried it, and ended up stopping due to time and expense… we have to pick and choose sometimes, especially since some of Kaspar’s stuff gets pretty expensive. Ayurveda, it’s worth mentioning—aside from practitioner’s fees—is a famously affordable system of DIY healthcare). His basic contention is that none of these doctors can ultimately cure Kaspar of his allergies, though, an opinion we differ dramatically on. I feel that when something is wrong in the body, there’s a reason for the misfire (whether or not doctors know what, specifically, it is). If there’s a misfire taking place, there’s a reason behind that, too. There’s an imbalance, and imbalances can be brought into line. The body is complex and mysterious, but it’s whole business is to heal. It’s alive, a whole working system that supports life itself in infinitesimally small and interconnected ways. (Actually, maybe we're more in agreement on this than I thought... I don't expect any treatment to cure Kaspar of his allergies, per se; I hope all we're working with will help his body cure itself). This is why, in the absence of a western medical understanding around food allergies and their origin, cause, or even effective treatment, I’ve turned, for a year now, to whole-body approaches to health. TCM has delivered the most immediate and direct results we’ve seen, in terms of Kaspar’s skin (which is a good sign—the skin, the body’s most multitalented organ, reflects internal imbalance quite directly). Aaron agrees with this. But I can’t say for sure that it’s helping address the underlying issue—which is to say, correcting the imbalance and curing Kaspar of his allergies-- any more than, say, NAET did, or homeopathy is. We’re sticking with our system, though, with all that we’re trying and doing (including pacing ourselves and living life in the process)—and following the new paths that open up. Because something—or everything together-- is working. I don't need to know in what combination as long as we remain on the up and up.
I’ve been waiting for a year to see evidence of this, researching, trying things, going with what seems to help, or make the most sense, or is harmless and potentially helpful (homeopathy, so far, falls in this latter category). We’ve moved forward, largely in the dark, following trails of (gluten-free) crumbs, finding ourselves up against walls, feeling for cracks, pawing for rabbit-holes, fumbling for keys. We’re not ‘there’ yet, wherever there is, but I’m going to savor every morsel of this moment, in which we have a first sense of proof that what we’ve been hoping for is happening. And this new allergist, Ayurveda, TCM superstars in New York (our former home, to which we feel forever connected by our small family’s roots, where our destinies wound together, and Kaspar’s began)-- this next year ahead can barely contain itself. It’s brimming and humming, streaming in like light through cracked blinds, partitioned pieces of sunrise speckled with white-gold dust, lighter than air.