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.

Ultima Actualización de Nicaragua: Diagnóstico

I still remember the first time I was asked if Martin had a diagnosis. That first time, it came as an indirect question. It was November 2010. Martin was two years and four months old. We had no official diagnosis, only my high-school friend’s assessment: “I know this isn’t easy to hear, but based on what I’ve seen, Martin has autism.” Martin had stopped pointing and started posturing, squatting to crunch the pain in his gut. He’d also lost eye contact. He’d done more than lost eye contact. He was aggressively avoiding eye contact. Whenever he perceived a face near his, he thrust his eyes sideways.

“Yeah, what is that? Is something wrong?” A friend asked. Martin, bundled in winter gear and strapped almost immobile into a stroller, was still managing to turn his head, move his eyes, anything to avoid looking at her. Unprepared, I fumbled an answer, “Um, technically, I think some people might call it ‘high-functioning autism,’ but we’re still figuring things out. Probably it’s fine.”

Here is my last post on Nicaragua (this year, at least): I can’t remember, since November 2010, ever going two whole months without being asked, “Does he have a diagnosis?”

Thank you, Nicaraguans and ex-pats. Thank you for not caring about a diagnosis.

Actualización VI de Nicaragua: Un Projecto Comunidad

We’ve returned, reluctantly, to the States, and I’ve got some time to reflect on the Nicaraguan experience.

I think one reason that Martin felt so at home in Nicaragua—one reason that we felt so at home in Nicaragua—was that Martin seemed to become almost a community project, among both the ex-pats and the Nicaraguans with whom we interacted.

Martin loves to zip-line. We had two adventure parks near us. The first park created a “good-customer discount” for Martin: As long as someone accompanied him, Martin participated for free. The second park held a staff meeting and decided that because Martin is un niño nervioso—an “anxious boy”—he should receive 30% off all adventures, so he could build his confidence through outdoor activity. Martin’s favorite seafood restaurant served octopus with dairy-based garlic sauce. Martin loved the octopus, so the kitchen workers took it upon themselves to create an oil-based garlic sauce just for him. Waiters, gatekeepers, and cuidadors went out of their way to greet him. A local surf shop, owned by a German national, outfitted Martin with a collection of its beach wear, for free, on the basis that having a cool look would help Martin feel good about himself. We didn’t ask for these accommodations. They just happened, because, apparently, un niño nervioso needs a boost now and then.

And in Nicaragua there was never a question about whether Martin could accomplish something, just how to go about it best. I volunteered to send Samara to day camp with Martin, as a sort of helper/aide. Not necessary, the directors told me the first week; he was doing fine independently, they said, and Samara would coddle him too much in front of the other kids. “Would you let me teach your son to surf?” asked one of my coaches at the local gym, also a surf instructor. “If he can ski and skate, I know he can surf.” The third-and-fourth-grade teacher at the international school encouraged me to consider enrolling Martin there. She said, “My background is in special education. I know he’d fit right in, in my classroom.”

Once, when we were out to dinner, Martin asked permission to leave our table and eat with a half-Nicaraguan friend, Alejandro, and Alejandro’s American grandfather. (Martin had his iPad, and the boys decided to play Minecraft together.) The next day I encountered the grandfather and struck up a conversation. “You might have noticed Martin has some social challenges. I hope he and Alejandro weren’t too much of a handful at dinner.” The grandfather responded, “Oh, really? Funny. After your family left the restaurant, I said to Alejandro, ‘Did you see how Martin always extends his hand and introduces himself? You should learn to do that’.”

I was tickled pink.

Not that everything Nicaraguan was perfect. The day camp, with its week-to-week enrollment, had regular turnover, and the second week Martin experienced some pretty intense bullying. I witnessed it myself: At drop-off one morning, at the local park, Martin said hello to a group of five kids. One by one, those kids picked up their backpacks and moved to another area, without acknowledging Martin. Appearing confused, Martin followed them and said hello again. The oldest boy, without looking at Martin, said, “I see something really interesting over there. It’s a tree. I’m going to see the tree,” and left. The other kids promptly followed. Martin, realizing he’d been rejected, climbed onto a swing, alone. When two pick-ups arrived to shuttle the kids to the camp, these kids piled into one truck’s bed—safety advocates, I know! but when in Rome . . .—then blocked Martin from getting in, telling him that all the spots were reserved for their friends. I was standing nearby, so I said, “I don’t think you can reserve the spots. Let Martin sit.” A girl in the bullying group, about seven years old, looked me directly in the eye and said, “No, we can do whatever we want.” (I was taken aback. I don’t know any child who would speak that way to an adult, much less an adult who is a stranger to her! This girl, dear readers, was simply a brat.) I contacted the camp directors the same morning, and fortunately, they jumped on the situation immediately. By Friday afternoon, Martin was calling the bullying group’s ringleader “a kid who wasn’t kind to me at the beginning of the week but then got nicer.”

Taekwondo didn’t work out so well, either. Martin does taekwondo in the States. It’s a gentle program, with three or four instructors for the 45-minute classes and a series of ten belts, which are earned for learning sequences of kicks and punches. Taekwondo in Nicaragua, at the only dojang in town, was serious business: two-hour classes, one master for more than twenty students, four belts awarded at the master’s discretion, and sparring for everyone. Martin couldn’t follow and shied from kicking and being kicked; he’s not ready to spar. The master didn’t seem to understand when I explained Martin’s challenges and often seemed annoyed or frustrated with Martin. Halfway through the summer, when Martin asked if he could “maybe stop doing taekwondo until we get home,” I agreed.

Fortunately, isolated bullying and advanced taekwondo didn’t ruin an amazing summer, or the perception that our Nicaraguan community was rooting for Martin’s success. In the States, I have that perception from the autism-recovery community—but not much more widely.

Martin didn’t accept the offer for surf lessons, I should mention. He says he’ll try surfing next summer. Because we’re going back to Nicaragua next summer. Was there any doubt?

Actualización V de Nicaragua: Hoy Comienza un Año Mejor (Esperamos)

This is a follow-up to my last post, on Martin’s questions about Otto Warmbier.

More conversations have been happening. Last week, Martin initiated this dialogue with me:

Martin: “Mommy, even though the other kids made fun of me, I still think I had a pretty good year in school last year.”

Me: “You thought there was more good than bad in the school year?”

Martin: “Yes.”

Me: “How about this summer at camp? Did you feel like the kids at camp made fun of you, too?”

Martin: “Sometimes they did, but like less than at school.”

Me: “Was it a good summer at camp?”

Martin: “I think it was a good summer.”

Me: “I remember, when I was little, how sometimes kids made fun of me. I didn’t like that. It hurt my feelings.”

Martin: “When did they stop making fun of you?”

Me: “I would say things changed in high school. That’s when I found new friends, more like me, who had some more interests like mine.”

Martin: “High school?”

Me: “But you never know. It could get better every year. Third grade might be a lot better than second grade. You’ll have new kids in your class.”

Martin: “Yeah. I think third grade is probably going to be pretty good.”

Posted without additional commentary.

Legislative Commentary. Sorry, Not My Usual Thing, But This Deserves an Exception

As promised in yesterday’s post about medical marijuana, and with permission, I’m posting the testimony of my friend Victoria Grancarich. This testimoney will be given before Minnesota lawmakers this September. Victoria’s circumstances are very different from mine, as her son’s place on the spectrum is far from Martin’s. But this epidemic is all one spectrum. We stand in solidarity with each other, and root for what helps any child.

Victoria’s 14-year-old so, Julian, is profoundly affected by autism. Victoria and her husband, John, have truly scoured the ends of the Earth to help Julian and have made progress healing his mind and body. Nevertheless, several years Julian threw himself from a balcony, breaking his back and both his legs. With the onset of puberty, Julian’s self-injurious behavior escalated to the point that he needed constant restraints and protective gear to avoid beating himself into concussions. Victoria and John believe medical cannabis saved their son’s life. As a friend and observer, I agree. In my opinion, to deny marijuana to Julian would be abuse. Yet, this medication was available under Minnesota law only because Julian also suffers from seizures; if he suffered from self-injurious autism but not seizures, the marijuana option would be unavailable. Victoria offers her testimony in an effort to have the law changed and make medical cannabis available to all Minnesotans in need.

My name is Victoria Grancarich. I’m the mother of a 14-year-old boy named Julian. Julian has severe Autism and a seizure disorder. Julian began having seizures in June of 2011. We have tried many medications over the last six years; however, seizures and motor tics continued to be an issue.

Julian had always been a kind and affectionate boy in his younger years. When Julian turned 13, the onset of puberty brought new challenges. In February of 2016 Julian became extremely violent toward both family and school staff. He began raging daily and would physically attack us. It got to the point where we as his family needed to wear protective clothing to avoid being bitten, having our hair pulled, and being kicked and punched. His younger sister could not be in the same room, and she had to spend all of her time at home locked in her room for her own protection.

In August 2016, Julian began to turn the violence on to himself. He began punching himself in the head full force thousands of times per day. He would use his knee to injure his teeth. He would bang his head into walls. We were powerless to stop him. We were trying to protect him using helmets and arm immobilizers, and at times we had to physically restrain him for hours at a time to keep him from harming himself. We believed our son was in terrible pain and was suffering from debilitating headaches. We saw this once vibrant boy lose his will to live. He seemed determined to end his life and came close several times. Between October 2016 and January 2017, Julian was hospitalized three times. He suffered self-inflicted skull fractures and massive tissue damage. He had black eyes and giant hematomas on his skull regularly. The hospital staff offered psychiatric medications as well as gabapentin but nothing could stop the daily rages that lasted every moment that he was awake. I felt certain that if we could not get Julian cannabis that he would find a way to end his life.

Julian qualified for cannabis through the state program because of his seizure disorder. After being sent home from Children’s Hospital in Minneapolis after another life threatening episode of self-injury with no plan in place to heal our son, we felt cannabis was our only hope. The excruciating pain our son was in was getting worse and we knew no pharmaceutical medication could help him. We had tried everything the doctors offered and had absolutely no success.

We enrolled him in the Minnesota Cannabis program in January 2017. Within a week of beginning cannabis therapy Julian was able to go about an hour without harming himself. As the weeks went on and we reached a therapeutic dose Julian’s behaviors began to slowly melt away. By early March he was smiling again. Within six weeks of beginning cannabis Julian was no longer injuring himself or others. He began to take an interest in his life again. He returned to school full time. We were able to remove his helmets and protective gear. By mid-March we were getting smiles and hugs. Julian began to go outdoors again by mid-April. By May Julian began to show interest in using augmentative communication for the first time in his life.

It is now late June. We have not seen one episode of self-injury since early March. Julian has not struck me since February. Julian is enrolled in a day camp for children with special needs where he spends eight hours a day. He is exploring outside and making friends. He is happy and smiling. Julian and his sister have a relationship once again. Julian spends hours in our back yard enjoying bouncing on his trampoline, moving his body and taking in fresh air. He lives safely and happily in our home. He is free from pain. His seizures and motor tics are well managed to the point they are not interfering in his daily life.

Cannabis gave us our beautiful son back. Julian Grancarich is alive and well today because of this miracle medication.

Knife

We knew when we put Martin in public school that socializing would be problem.

It has been.

Academics: Not a problem.

Speech/language: Fading as a problem, except for social/pragmatic usage.

Behavior: Sometimes a problem (the silly, detox-y days), but his teacher handles the behavior masterfully.

Socializing: Problem alert.

Last month, in the post titled, “I’m the Issue,” I wrote about my concerns for Martin’s self-esteem.

At night, when the reading is done and the teeth are brushed and Martin and his stuffed Minions are tucked under organic linens, I sit on his bed to tell him that he’s a great kid and very, very loved. If he’s having anxiety, I make him repeat: “I am safe. My mom is in the house. My dad is in the house. My mom and dad will keep me safe, and I will keep my Minions safe. I can sleep well tonight.” Sometimes we talk about the day he’s had, or the next day he will have.

“Is it okay,” he asked me two weeks ago, during this intimate time, “if people don’t like me?”

I said, “Of course it is. Everyone has some people who don’t like him or her. There are people who don’t like me. There are people who don’t like Daddy. You can’t make everyone like you.”

“But is it okay,” my beautiful eight-year-old son continued, “if no one likes me?”

I am a failure.

Bound To

The autism recovery path is so jagged—so many ups and downs—that the key to longevity is managing my own emotions. Well, one key. Other keys are financial stability, a supportive co-parent, close friends, a cooperative school district, available therapies, access to organic foods, home ownership or other opportunity to create a cleaner living space, and let’s face it, we’re talking about innumerable keys. But certainly managing my own emotions is one. I struggle not to pin my mental state, any given day, to Martin’s transitory condition. Martin has good days and bad days, good weeks and bad weeks, good months and bad months. I don’t mind the elation when Martin feels well and performs well. Giving into despair when he doesn’t is a recipe for driving myself crazy.

That being said, it never ceases to bewilder me when Martin looks near-typical one day and strongly symptomatic the text, without any obvious intervening factor.

Two Fridays ago Martin earned his yellow belt in taekwondo. He didn’t perform exactly as well as the other eight-year-olds being tested but nonetheless paid attention and made the correct moves and legitimately earned the belt. We went out for sushi to celebrate, and Martin went to bed early. He spent that Saturday in New York City with his uncle Eddie. By all reports they enjoyed themselves and Martin’s behavior was stellar. Saturday evening we had dinner at home; Eddie (who eats meat, occasionally) and Martin had organic roast turkey, Brussels sprouts, and brown rice pilaf with vegetables and sprouted pecans. Martin, exhausted from his day, again went to sleep early and without incident. That night he slept 11-and-a-half hours.

Nothing changed.

Nothing, except that Sunday morning Martin was antsy in church. He rocked around during children’s time and, I learned later, disrupted Sunday school with incessant talking. That afternoon he became crabby. Sunday night, alternating between anxiety and cracking himself up, he had trouble falling asleep. I dropped off close to 11:00 pm. He was still awake.

Monday’s school report was—less favorable than one might hope.

Tuesday’s report was—disastrous. After school, Martin looked goofy and distracted at taekwondo class. At church Kids’ Klub, in front of all the children, he called the teacher a “liar” when she misspoke and said “tomorrow” instead of “next week.”

By Wednesday evening, following a trombone lesson that made me ask myself why I’m still paying for trombone lessons, Martin was running back and forth. Remember that? Run from sofa to stairs, stop, turn, space out, then jump and pa-dap-BUMP, run back to sofa, stop, turn, space out, then jump and pa-dap-BUMP, repeat. Classic repetitive behavior. Haven’t seen it in months. Months. Before Wednesday, I would have put “running back and forth” into the “so far gone” bucket.

There were other behaviors too, both at home and at school, that for Martin’s privacy I’d rather not document here.

On Thursday, Martin started to reemerge from the mystery fog. Thursday’s note from school said, “Martin had a better day. :-)” Friday, which was a parent-teacher conference day with no school, Martin had a successful play date with two friends and focused well at taekwondo. Saturday afternoon he worked three hours on a Lego project with Adrian, without complaint. Sunday he hosted a home play date for three friends.

The Friday-Sunday update is based on reports from Adrian and Samara. I was away for the weekend, with six girlfriends from high school. Some of them read this blog. Thanks, ladies. You sustain me.

So why did Martin, without any apparent external stimuli, tank for several days? I don’t know.

And why did Martin’s Wednesday ROOS, combined with a Friday parent-teacher conference about behaviors that are causing fellow students to alienate him, send me into a tailspin, albeit a short-lived tailspin? That I do know, and I’d like to find a way to change the answer.