Hives

Martin is allergic to horses. He didn’t always present as allergic to horses. When he was four and five years old, he did hippotherapy weekly, without problems. When he was eight years old, on a visit to Costa Rica, we went horseback riding on the beach: Martin, Adrian, my brother-in-law Pancho, and I. We rode for an hour. I was second in line; Martin, wearing shorts and a small t-shirt, was third. Every few minutes I turned around to glance at him, make sure he was still riding comfortably. I saw no issues. But when we arrived back at the stables, and I was able to see Martin up close, I could see that he was covered in a red rash. Rashed on his arms. Rashed on his legs and, I soon discovered, on his chest and belly. Most of all, rashed on his face, which was red and bumpy. “What’s wrong with me?” he exclaimed and burst out crying. I checked his breathing (it was okay), took him back to our rental house, and put him in the shower. With good scrubbing and an antihistamine, the rash dissipated.

After the Costa Rica experience, I asked Martin’s allergist—a mainstream doctor, not focused on ASD—to test Martin for a reaction to horses. The doctor agreed, though he had to order a special skin test. When it was finally available and administered, the test left no doubt: Martin’s forearm immediately swelled into a red bump. No more horses.

On that same Costa Rica trip (August 2016), we discovered Martin had become allergic to red meat.Sixteen months earlier, in February 2015, in South America, Martin was eating beef with roast potatoes when a red rash formed around his mouth.(That trip, however, he’d ridden horses with his cousins, no problem.) Still I didn’t realize that red meat, which he rarely ate, was the issue; of the Costa Rica trip, I wrote: “He had two allergic reactions, one to a horse that left his face bumpy and itchy, and one to an unidentified food irritant (restaurant) that caused a rash to spread from the corners of his mouth down his neck.” Subsequently I put the pieces together and stopped letting Martin eat beef—but it would be more time yet before I figured out that all red meats were problematic, not just beef. (That discovery, in a “bison incident,” is described here.)

This summer, in Costa Rica again, Martin’s day camp was having an activity in which the kids rode horses to a remote waterfall. I wondered: The allergy came on when Martin was already six (or seven? or eight?) years old. Does he still have it? These Johnny-come-lately allergies—do they stick around? I wanted Martin to be able to participate in the horseback-riding activity, and not to experience one more factor differentiating him from other kids.

So I acted recklessly. (Maybe?) I told the camp director that Martin is allergic to horses. I told her about Martin’s reaction two years earlier, also in Costa Rica. I said I was going to dress Martin in long sleeves, long pants, and high socks, and send him to camp. I asked her to let Martin give the activity a try and see what happened. I reminded her that Martin always carries antihistamine in his backpack, just in case.

Mid-morning, I received a message from the camp director. Martin had only been on the horse a few minutes when he got a terrible rash. She took him off the horse immediately and administered his antihistamine. The reaction was severe enough that she also took him directly to a shower to wash. Thankfully, he was better within a short time.

That’s that. Martin has become allergic to horses, possibly permanently, just as he has become allergic to cats and dogs and has become allergic to red meat.

I am, of course, back to pondering why Martin has developed allergies as he continues to heal. I still think the most likely explanation is that he had these allergies (with the possible exception of red meat, which may or may not be related to Lyme disease) all along, but previously his immune system was neither strong nor responsive enough to mount the proper response. Whereas allergies themselves represent flaws in immune function, perhaps one day Martin’s full recovery will mean the allergies dissipate along with the remaining vestiges of autism.

Today, let’s not dwell on the allergies, and what they might mean. Instead, let’s focus on this: According to the camp director in Costa Rica, Martin didn’t freak out, not even when he was covered in a rash and pulled away from the other kids. She said he was upset for a minute or two, then calmed down. Two weeks later, when the activity again was horseback riding, I offered Martin a choice: He could go to camp and play games or surf while the other kids rode (the director had offered this alternative), or he could take the day off and go to the beach with Uncle Eddie. Martin contemplated for a while, then chose to take the day off. It seemed like a reasonable choice, and it wasn’t a big deal.

Because now, not everything has to be a big deal.

Otra vez, aquí estamos. Hasta Septiembre

We are back in Central America. Alas, not in Nicaragua, el país más bonito de mi corazón. We planned to return to Nicaragua this summer, and held fast to that plan as long as we could. During June, however, the political violence reached as far south as where we stayed last year, in the Department of Rivas; north of Rivas city, a young man was killed defending a tranque against pro-government forces. Shortly thereafter, the director of Martin’s day camp (and one of Martin’s Nicaragua-based cheerleaders-in-chief) notified me that they would likely not have enough kids to run camp this year. At that point, we canceled our summer house rental, sent part of the deposit to a trusted friend in Rivas to distribute among local families most in need, and hastily assembled a new summer.

This is of course an autism-recovery blog, not a political blog, and I am no expert on Central American politics. I will limit my comments about the Nicaraguan situation to this: Daniel Ortega is unleashing this violence upon the very families who, a generation ago, fought for the right to elect him. The people of Nicaragua don’t deserve these troubles. Please look for ways to support Nicaraguan self-determination.

So Martin and I find ourselves on the other side of a border, in Guanacaste, Costa Rica (with hopes to cross, later, into Nicaragua at Peñas Blancas and visit our friends there). You may recall that Costa Rica was where I first noticed how well Martin does in the Central American environment. Even as we mourn our time in Nicaragua, I am grateful to be here: grateful that we were able to rent a house on short notice, grateful that I found a community with a day camp, grateful for daily saltwater swims and abundant  sunshine. This area is populated by gringos here temporarily, chasing the pura vida, and I don’t have much hope of finding the same kind of lasting connections we made in Nicaragua, where the gringos tend to be long-term ex-pat residents. No worries, though. Everything else is grand.

Martin started day camp last week. I had corresponded in advance with the camp director about Martin’s food and environmental allergies. (When you’re talking about Central American activities, “allergic to horses” becomes surprisingly relevant.) The tougher conversation, about Martin’s real challenges, I left to have in-person; giving advance notice, in writing, of Martin’s social and attention deficits tends to create an image that can be hard to shake, even after Martin himself appears. I remember still the remark of a German relative, years ago, when she first met Martin: “Als ich das Wort gehört habe—Autismus—habe ich mir was ganz anders vorgestellt”: “When I heard that word—autism—I imagined something else entirely.” We no longer have the A word to fear, but preconceptions nonetheless pose dangers. The first day of camp, I stole the director for a few minutes. I said that Martin had some previous language delays, and because he is still catching up, he struggles with social interactions. He wouldn’t give them any trouble about participating, I explained, but we do worry about bullying and hope they will keep an eye out for that.

“That will be no problem,” the director replied. “We’ve had all kinds of kids at camp. Even kids with autism.”

“Oh!” I said. “If you’ve had kids with autism, you can certainly handle Martin. It’s nothing like that.”

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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