Mystery Abundant

This morning Martin had a light allergic reaction to his breakfast. About halfway through eating he started to rub his eyes, which were red and teary. When I asked whether his eyes were itching, he stammered, “No, they’re just being funny.” Then he sniffled and grabbed at his nose. It looked like his recent reaction to wild boar.

I happened to have photographed his breakfast before he started eating.

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The pancake-fritters had five ingredients (butternut squash, egg, cinnamon, nutmeg, and red palm oil) and were fried in rice bran oil. The smoothie contained coconut water, fresh mango and avocado, and frozen berries.

What on earth could have caused the allergy? My best guess is maybe the cast iron pan in which I fried the pancake-fritters. It’s a well-seasoned pan, and most likely it’s seen wild boar in the past month. That would be only trace amounts, I suppose. But nothing in the breakfast invites suspicion. Other than butternut squash and rice bran oil, Martin ate all the same ingredients yesterday, when I made sweet-potato waffles for breakfast.

I am disturbed by Martin’s increasingly frequent (and sometimes seemingly random, or at least unexpected) histamine reactions. For years, I told myself, “Autism is enough to deal with. Thank goodness he’s not also an allergy kid.” Understanding Martin’s health and immune system is maddening enough without constant new variations, thank you very much.

Meat Allergy, But Maybe No Alpha-Gal? Well, Good. I Should Be the Only Alpha-Gal for My Alpha-Kid

Back in January, I wrote about Martin reacting to beef. I speculated that his beef allergy was related to his Lyme disease, and specifically to Alpha-Gal (galactose-alpha-1,3-galactose), a sugar produced in the gut of the Lone Star tick (and possibly other ticks?) that can be transmitted to a human through a bite, causing the human to react to the Alpha-Gal also found in red meat.

The first time Martin showed allergy to any meat other than beef, we were at a restaurant in California. He ordered a bison patty. Before he’d eaten half, the rash appeared around his mouth and spread down his chin and onto his neck, all predominantly on the right side—exactly what happens when he eats beef. I summoned the manager and insisted that the staff must have substituted a beef patty for the bison, or cooked the bison on the same surface as beef. The manager was equally insistent that no such thing had happened. I’m glad I didn’t make too big a deal over the incident, because later, when Martin had the same reaction to bison carefully prepared at home, I realized what actually was going on: His allergy was no longer limited to beef. Since then, Martin has developed a rash after eating elk and venison, too. Most recently, twice, wild boar triggered a histamine reaction in the form of watery eyes and a runny, itchy nose.

Alpha-Gal allergies, which appear to originate exclusively or near-exclusively from tick bites, are increasing rapidly across the Eastern United States. The allergy was first identified in the Southeast. Since then, reports have arisen up the Midwest corridor and in the Northeast. Indeed, one of my meat purveyors, located in the Northeast, kindly sent me a list he’d developed of his products that do and do not contain Alpha-Gal. “We’re getting the question more and more,” he said. “Seems like a lot of people have the allergy, so I made this list.”

Nevertheless, for two reasons, I’m rethinking whether the Alpha-Gal carbohydrate in fact is triggering Martin’s allergy.

First, when he eats red meat, Martin develops a rash immediately. All studies and informational sites I’ve reviewed indicate that an Alpha-Gal allergic reaction to eating mammalian meat is a delayed reaction, typically manifesting three-to-six hours after ingestion.

(By contrast, an Alpha-Gal reaction tends to be immediate when the body encounters the carbohydrate through injection or infusion, as opposed to ingestion. For example, exposure to intravenous cetuximab, which is a monoclonal antibody specific to epidermal growth factor receptor (EGFR) and used in cancer treatment, has caused immediate reaction because it contains Alpha-Gal. And even without an allergy per se, Alpha-gal is the likely culprit when porcine bioprostheses, utilized in cardiac surgery, cause xenograft immune response.)

Second, Martin reacts differently to wild boar than to beef, bison, venison, or elk. The higher-myoglobin meats cause a rash—red blotches sometimes accompanied by raised patches—that doesn’t seem to cause Martin discomfort. Wild boar, however, makes his eyes water and then become puffy (most likely from his rubbing them), and makes his nose bother him. Since the Alpha-Gal carbohydrate is in the same form in all these meats (I think?), it seems counterintuitive that Martin’s reaction would vary.

So I am investigating whether Martin might have developed a meat allergy other than Alpha-Gal. The investigation has proved challenging, because I’ve found almost no information about meat allergies other than Alpha-Gal, other than statements that such allergies exist but are rare. There are tests advertised to detect meat allergy (I’ve never looked into them and express no opinion on whether they work). It seems that, if the Alpha-Gal carbohydrate is not to blame, then the person is probably reacting to specific proteins.

As to pork, and specifically Martin’s teary-eyed reaction to wild boar meat instead of higher-myoglobin meats, there is something called pork-cat syndrome. (Seriously. “Pork-cat syndrome.” I’m not making this up.) Persons with respiratory allergies to cat albumin (a protein made by the liver) may also demonstrate allergy to pork, given the structural similarities between cat and pig/boar albumin. Two years ago Martin developed a respiratory allergy to cats, though I’m not sure whether he reacts to cat albumin or to Fel d 1, which is the more common cat allergen. Maybe “pork-cat syndrome”—it’s hard for me even to type the name without laughing—explains the boar reaction.

Then there was the last day of school, in June. Here’s something I wrote in my July 4 post about medical cannabis:

On the last day of school we invited friends and classmates (both challenged and typically developing) to a pool party. I grilled burgers, beef for the guests and boar for Martin. I had a variety of burger buns on hand for the kids’ diets and allergies. I had no bun for Martin’s burger, because he has never had, or requested, a bun. This time, he did request a bun, and became agitated when I wasn’t able to produce one for him. I wanted to avoid a meltdown, especially in front of the typical classmates, so I let Martin eat an Udi’s® Gluten Free Classic Hamburger Bun. (According to the listed ingredients, these rolls contain resistant corn starch, cultured corn syrup solids, maltodextrin. I never would have given one to Martin under ordinary circumstances.) About ten minutes later, Martin was screaming and clawing at his torso. He’d had some sort of allergic reaction, to something. I pulled off his swim shirt and saw his midsection covered in red welts, with bumps emerging before my eyes. I shoved a spoonful of dye-free Benadryl into his mouth a tried to calm him.

. . . I had no idea whether Martin was reacting to the Udi’s roll; it could as likely have been residue from the beef burgers, or given that he was affected almost exclusively from waist to chest, some contaminant on his swim shirt or something he’d got into around the pool.

Now I’m wondering whether the culprit was the boar, plain and simple.

When I wrote the post in January about Martin’s beef allergy and the possible indictment of Alpha-Gal, I fretted that the allergy could spread from beef to other red meats. That’s happened. I’m on to worrying that if the allergy is something other than Alpha-Gal, it could spread beyond red meats to poultry as well.

Here’s another thing: I’m a long-time vegan who felt compelled to allow her son to eat meat in order to heal his digestive issues. Let’s spend a few minutes contemplating the irony of my son developing an apparent allergy to meat.

A&A Part III: Mold, or How Far Do We Go?

We had the whole house checked, top to bottom, for issues and possible allergens after Martin started having these reactions. Overall, our house is doing pretty well. Mold in the air is low. Mold in dust samples (dust? what dust?) is normal-to-low. Mycotoxin sample shows barely perceptible positive for tricothecenes. Total VOC air sample is ideal, and mold VOC air sample is low.

The consultant did notice “some mold on the floor joists in the basement,” which he speculates is leftover from before we bought the house. It does not appear to be affected air quality or spreading.

So here’s the question: How far do we go? Before we moved into the house, a couple years ago, we had basement mold remediated. That mold had a clear source; the previous owner had left a ground-level basement window open during Superstorm Sandy—evidently she thought the basement would be better with “circulation”—and water poured through the window, leaving ickiness in its wake. Remediating that mess was like those scenes at the end of E.T.: The Extra-Terrestrial. You know, when scientists and government officials are obscured in protective gear, and plastic sheets cover everything. That was how our house looked, to annihilate the Sandy mold. You can imagine the cost.

Do we do that again now, to go after some petty bit in floor joists not affecting air quality? Not at this moment, no. I’m going to put that mold onto the “monitor” list instead. Autism recovery, however you approach it, can be a highway to the poorhouse. Chasing after a bit of mold, right now, seems like a voluntary move into the fast lane on that highway.

Martin, as Donald Duck, trick-or-treating with friend.

Martin, as Donald Duck, trick-or-treating with friend.

A&A Part II: Formaldehyde

When we moved to the suburbs, June 4, 2013, we bought Martin a new bedframe, a twin-size rally car frame. Because of wheels, bumper, and built-in shelf, it occupied more space than the plain, unfinished hardwood frame he’d had previously. In the City, his bedroom was too small for a fancy rally frame; the suburbs have some advantages.

We did not, however, replace Martin’s mattress, which was an expensive organic mattress that I’d ordered two years earlier from California. A bedframe is one thing. An organic mattress does not get replaced so willy-nilly.

Martin never adored the rally bed, even though he and Adrian had picked it out together on-line. I think the metal headboard and side rails were cumbersome. Martin still tends to toss and turn at night, and to throw his limbs over the bedside. I would hear him at night, banging his arms and head on metal. Plus, the metal was cold. I didn’t love the rally bed, either. At the time, I still had to pick Martin up, out of bed, while he was sleeping, to take him to the bathroom or help him wake up. As he grew bigger, it was hard to lift him over the rails without straining my back.

What I did know was that the rally bed was safe. I’d researched the materials of which the frame was made, and the manufacturing processes, and I felt comfortable that they posed no particular dangers.

This June, 2015, Martin decided to break up with his rally car bed. The end of their two-year relationship came suddenly. Martin, for a couple weeks, had been having trouble falling asleep. One night, after an hour or two of talking to his stuffed animals, giggling, dancing down the hall to the potty, and calling for drinks of water, Martin asked to sleep in the queen-size bed in the guest room. I can’t remember whether I acted out of frustration, or exasperation, or hope, or some combination; in any event, I let him climb into the guest bed, and he was asleep within minutes.

The next night, the same scenario replayed. Martin stayed awake, busy as a bee, until finally he finagled permission to move to the queen-size bed in the guest room. The night after that, he skipped the rally bed altogether and asked to do bedtime in the guest room. He also stopped having trouble falling asleep. I don’t know why. Maybe the “trouble” was intentional, a ploy to try a different bed. The explanation he gave was, “Now that I’m almost seven, it’s just easier to sleep in a big bed.” That’s exactly what he said: “It’s just easier.” The little cad.

After Martin had been sleeping, without issue, in the guest room for more than a week, Adrian and I devised a plan. I didn’t want Martin to continue sleeping in the guest room. Unlike his bedroom, the guest room isn’t coated in EMF-blocking paint, isn’t right next to my and Adrian’s room, and doesn’t have his name on the wall in wooden block letters. On the other hand, Martin wanted a bigger bed and seemed to be sleeping better in a bigger bed. His own bedroom, though bigger than his City bedroom, is not wide enough to accommodate a queen-size bed. Adrian and I decided the solution was to offer Martin a double bed for his upcoming seventh birthday, and to bill the gift as a “big-boy bed.” In fact, we would give his bedroom a mini-makeover, changing the Curious George theme to an outer-space theme, because he’s into planets and moons.

(Actually, we offered Martin a list of new room themes to choose: music, outer space, books and writing, Big Hero 6, sports generally, or the New York Rangers. I was pulling for the Rangers. I was silently willing him to choose the Rangers. But it wasn’t meant to be. Martin likes planets.)

A big-boy double bed needs a big-boy double-size mattress, and for Martin it has to be an organic mattress. To make our big-boy-bed plan work, I would have to bite the bullet and shell out a lot of money for a new organic mattress. I found an organic mattress showroom not too far from us, drove there one morning, asked questions, compared choices, and ordered a satisfactory option. I also purchased a waterproof organic mattress cover, for the various mishaps that can occur in a seven-year-old’s bed. Then I set about procuring two double-size organic cotton sheet sets.

By the time all that was totaled, I was not in the mood to spend more money, and I suppose I let down my guard. I ordered an inexpensive bedframe, with storage drawers underneath, from wayfair.com. It arrived quickly, and with Samara’s help, I spent three days assembling the thing. (Adrian has myriad talents. The use of tools and hardware is not one of them.) The new organic mattress came just in time for Martin’s birthday. I filled the bed’s drawers with Martin’s stuffed animals, covered the mattress in organic sheets, switched the Curious George wall decals for outer-space wall decals, and hung up posters of the planets and moons. Martin loved his birthday gift. He immediately moved from the guest room back into his own outer-space room, into his new big-boy bed. That was at the end of June.

Martin’s allergy troubles began in earnest over the summer. As part of our search for answers, I asked our environmental consultant to check for mold, mildew, or other triggers to which Martin might be responding. Almost immediately, he found elevated levels of formaldehyde in Martin’s bedroom. Formaldehyde! It seemed to emanate from—did you guess this?—the cheap bedframe I’d bought online after spending so much on the organic mattress and linens. Martin has been exposed to formaldehyde. Way to go, me. Worse still, the consultant theorizes that the expensive mattress may have absorbed enough formaldehyde from the frame to pose an ongoing problem.

As soon as my parents, who are visiting from Texas, depart, Martin is moving back into the guest room and I’m throwing away—yes, throwing away, because although my first choice is to donate, I refuse to pass an unsafe product to any child—the bedframe. The double-size organic mattress will move to the basement in the hopes that it can air our enough to be safe again. (We have a well-ventilated basement with windows.) This time I will do my research and spend the money on a truly safe wooden bedframe, then have the organic mattress retested and hope it has become salvageable.

Remember the organic twin-size mattress that we brought with us from the City, the one that was on the rally bed? I didn’t have the heart to let that mattress go. It was too expensive. In my office I have a daybed with a trundle. I moved the twin-size organic mattress onto the trundle frame, under the main bed, thinking that we might one day put it to another use. Then my cats discovered that they could crawl underneath the daybed cover, onto the trundle mattress, and be tucked into their own flat cave between the trundle and the main bedframe. Before I even pinpointed to where the cats were disappearing hours at a time, they had left so much fur on the twin-size organic mattress that I wonder whether it will ever be suitable for humans again.

Way to go, me.

Martin doodled this on a homework sheet. I can't be sure, but I'm hoping it's some sort of representation of Henrik Lundqvist.

Martin doodled this on a homework sheet. I can’t be sure, but I’m hoping it’s some sort of representation of Henrik Lundqvist.

A&A Part I: The Issue

A couple months ago I wrote about mysterious allergic reactions Martin was having: puffy watery eyes, runny nose, and (later) spots on his face. We suspected maybe a food was the culprit and also started searching for environmental culprits. We also started treating for chronic Lyme disease. The spots have not recurred.

We have, however, had more sneezing and watery eyes. Then, last month, yet another symptom arose. My mother-and-law and I took a day trip with Martin to “Fun4All,” an indoor playscape way out on Long Island. We sat in the snack-bar area while he climbed, bounced, and looked for a friend. Every so often Martin appeared at our table, drank some water, and scampered off. I noticed he was sweatier than usual, and breathing heavily. I was happy that he was exercising so much.

After 90 minutes, Martin was too sweaty, and breathing too hard, and his eyes were watering, and he was coughing. I asked if he wanted leave, and he said he did. Whatever reaction he was having was severe enough that I started looking for triggers. I’d noticed a kind of chemically smell, so I took a picture of a sign posted in the restroom, which said that Fun4All is cleaned with “Simple Green D Pro 5,” a “one-step cleaner, disinfectant, virucide, fungicide, sanitizer, mildewstat & deodorizer” that is “hospital grade.” (In my world, that sounds scary. Very scary.)

We exited Fun4All. In the parking lot, I realized that Martin was wheezing. He was having a full asthma attack, like the attacks that strike my older brothers, who are asthmatic. I used my iPhone’s voice-memo feature to record Martin’s labored breathing, so I could share it with his pediatrician. Then I loaded him into the car and gave him a bottle of water. The wheezing faded within twenty minutes.

That was the first asthma incident. In the four weeks since, Martin has experienced half a dozen more, each time after exercising: ice skating lessons, bicycle riding, playground. He’s also coughed, a lot, had a generally runny nose, and breathed heavily at night.

The search for answers entered high gear. I contacted our environmental consultant to retest our house for mold and mildew, which we also had done before we bought the house. I talked to Martin’s autism specialist (his biomed doctor), who advised me to bring Martin to his pediatrician for traditional allergy testing. The pediatrician also sent us to a traditional allergy/asthma specialist, to evaluate the results of the pediatrician’s tests and to conduct additional tests. I requested a phone consultation with Martin’s homeopath.

Soon we were armed with an albuterol inhaler as well as a nebulizer for bronchodilators. (I don’t like to use pharmaceuticals with Martin, or with myself for that matter, but when it comes to breathing, I am not willing to mess around.) We also found, I hope, some answers.

This is the first of four posts on A&A, allergies and asthma. The next three will cover the potential triggers we’ve discovered. I hope that, in a few months, I will be able to write a post about resolving the Martin’s A&A.

I’m not happy about any of this. We’ve been fighting autism for years now. I don’t need any more A’s on my plate.

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Of Snot and Spots

Overcoming autism is like trying to escape an octopus’s clutch: Just when you feel free from one tentacle, another swoops in to take hold.

Martin had a terrific spring, and his digestion and health seem better than ever. Yeast has been under control for a year. Bowel movements are formed and firm. He sleeps. His height and weight are right where they’re supposed to be. His once-distended belly lies flat. We’ve wrested him from several tentacles.

Enter—allergies. At least, I think “allergies.”

Until recently, Martin has never had overt trouble with allergies. The first sign of a change was a few months ago, at a diner. (Martin ordered an Angus beef patty, no bun, and steamed broccoli. The catsup he ate was not organic. It was full of crap.) Midway through the meal, Martin started sneezing and rubbing his eyes. His face became red, his nose ran, his eyes puffed and watered. I had no idea what was going on. I did my best to dab at his eyes with a damp napkin and make him comfortable. The reaction faded as we drove home, 20 minutes later.

A couple months passed without another incident. Then, in July, he had three such reactions in one week: two when he got home after school (Martin attends summer school), and one over breakfast. I don’t know if something in our house might be bothering him, something that coincidentally was also at the diner. I did notice that, with all three reactions at home, he was drinking camel milk when the trouble started. Accordingly, I’ve suspended camel milk until we figure this out. No more reactions of that type—runny nose, puffy eyes—have occurred.

Meanwhile, however, red spots have appeared on Martin’s left temple. They showed up two or three weeks ago, faded, and reappeared more prominently this weekend. And they’re breeding: When the spots emerged a few weeks ago, they were four. This past weekend, they were seven on his face and one on the back of his neck. The spots are neither raised nor itchy. They are not bug bites.

Terrible photography. Sorry. He didn't want to be still.

Terrible photography. Sorry. He didn’t want to be still.

So what the hell are they? Allergies? To what? Are they the result of a Heilkunst clear? Our last clear was PCV7. The skin is the body’s largest drainage organ. Or are the spots from clearing something else? We’re working on Martin’s biofilm now, plus the possibility (awaiting test results) of chronic Lyme, both of which involve antimicrobial drops. Is his body responding with spotty face?

Also happening nowadays: Martin’s ears hurt, and he’s coughing at night. His emotional regulation is terrible. He seems out of it. Where do those facts fit in the puzzle?

I’ve scheduled new allergy testing with Martin’s pediatrician, and I’m corresponding with our other practitioners, trying to figure this out, which leads to the biggest mystery of all: When exactly did I become qualified to make sense of such things?

I’ve never wanted to fight an octopus.

Let Us All Gather at the Table. How?

Sorry to be posting so much about food lately. Recipes. GAPS. Quinoa. Goldfish. Goldfish. Food and diet are what people ask me about the most. And now Thanksgiving is here, hands-down my favorite holiday. Like we did last year—since we have a house in the suburbs, we might as well use it for something—Adrian and I are hosting Thanksgiving in our home. At the table, along with me and Adrian and Martin, will be my mother, my stepfather, my brother Rudy, and a friend of Rudy.

The dietary breakdown—

Rudy’s friend: eats all foods.

Adrian and my parents: pescatarians, i.e., eat dairy, eggs, and fish, but no fowl or red meat.

Rudy and I: vegans, i.e., avoid all animal products, including eggs and dairy.

Martin: GAPS and casein-free, i.e., eats fish, meat, and eggs, but no dairy, grains (except for a smidgen of quinoa), refined sugar, or starchy foods like yams or potatoes.

Also, Rudy is allergic to most tree nuts. He can eat almonds and hazelnuts.

Try menu planning for this crowd. Go on, try! After much contemplation, I have decided that I will, for Thanksgiving, eat recipes that contain eggs. Rudy has agreed to do the same. With that, I think I have come up with a decent, if non-traditional, menu. Some of the recipes came from The Heal Your Gut Cookbook. Others I found on-line, on “paleo” or “no grain” websites, and modified the ingredients as necessary. The lentil-nut loaf calls for a special shout-out to The Simple Veganista and Oh She Glows. Finally, a couple recipes (mashed cauliflower and roast Brussels sprouts) are favorite old creations of mine.

My aim was to ensure (1) that everyone was happy and satisfied, and (2) that Martin could partake in every food on the table. Without further ado, here are the dishes I plan to serve, with ingredients:

Breads

almond flour zucchini bread

ingredients: almond flour, cinnamon, baking soda, salt, nutmeg, eggs, honey, banana, shredded zucchini.

coconut butter bread

ingredients: coconut butter, eggs, coconut oil, sea salt, baking soda.

pumpkin poppers (mini-muffins)

ingredients: coconut flour, sea salt, cinnamon, nutmeg, allspice, cloves, ginger, eggs, cooked pumpkin, cooked carrots, coconut oil, honey, vanilla.

Main Courses

fish (for the non-vegans)

ingredients: not yet known; what fish I buy, and how we prepare it, will depend on which Martin-safe(r) fish is freshest and available.

lentil-hazelnut loaf (for the vegans, and anyone else who wants some)

ingredients: brown lentils, vegetable broth (I make my own), flax meal, olive oil, fresh garlic, onion, red bell pepper, carrot, celery, gluten-free oats (not GAPS-compliant, so I may look for a substitute), hazelnut meal, thyme, cumin, garlic powder, onion powder, salt and pepper.

Side Dishes

quinoa stuffing

ingredients: quinoa, squash, onion, celery, bay leave, fresh garlic, fresh rosemary, fresh thyme, fresh sage, apple, raisins or dried cranberries, chopped toasted hazelnuts, apple cider vinegar, fresh parsley, cumin, olive oil.

garlic mashed cauliflower

ingredients: cauliflower, olive oil, salt and pepper, garlic.

raw kale salad

ingredients: curly kale, olive oil, lemon juice, apple cider vinegar, pumpkin seeds, red onion, avocado, salt and pepper.

roast Brussels sprouts

ingredients: Brussels sprouts, olive oil, lemon juice, salt and pepper, garlic.

Desserts

carrot cake with vanilla ice cream

ingredients: coconut manna, honey, carrots, cinnamon, shredded coconut, sea salt, baking soda, vanilla, eggs

ice cream: Raw Ice Cream (this has some raw agave and so does not comply entirely with GAPS; also, Rudy can’t eat it because it contains cashews).

chocolate pudding pie

crust ingredients: hazelnut meal, salt, baking soda, palm-coconut shortening, honey, vanilla

filling ingredients: avocado, honey, cocoa, apple cider vinegar.

Yes. I am going to try to prepare that menu. My mother and stepfather have already arrived from Texas, so I will get help from them. Still, if by chance I fail to blog any day next week, you will know why. When I ran the menu by Adrian, three nights ago, he said, “That sounds fantastic! You know what I think?”

“What?”

“I think if you’re going to pull that off, you’d better start cooking now.”