Actualización I de Nicaragua: La Ansiedad

As consistent FindingMyKid readers may know, I believe Martin’s primary challenge, these days, to be anxiety. Before I dive back into anxiety, here’s an abbreviated rundown of other challenges and where they stand now:

  • We have the rare night when he’s giggly and detox-y, or too anxious to drift off. By and large, however, Martin falls asleep within 20 minutes and wakes ten (or so) hours later.
  • Martin’s difficulties with social/pragmatic language persist, and his language processing lags; he might transpose “you” and “I” in a complicated sentence, or need a multi-step direction repeated. Other than that, Martin can read, hear, and speak at an age-appropriate level.
  • Energy and “floppiness.” Martin does get tired faster than other kids (thank you, mitochondrial dysfunction!), and when the energy runs out, he becomes clumsy, clingy, and sensory-seeking. This condition is improving and can, I find, be managed by alternating exercise and down-time.
  • As may be clear from the series of school bullying posts, Martin’s interest in playing with other kids has increased—it still isn’t very high, and I suspect he may always tend toward introversion (like I do)—but he has trouble figuring out how to go about becoming involved.
    • Example: In the house next to ours in Nicaragua are twin boys, maybe six or seven years old. We hear them playing in their pool constantly. Martin will creep to the edge of the yard and observe without making any effort to engage them, and he scampers inside when I suggest talking to the brothers. I mentioned this to Samara, who said, “I know. He does not like to be told to play. But I have noticed him getting closer to a few kids from camp.” His interactions are cautious and time-consuming.
  • Martin continues to perseverate, in the sense of “talking endlessly about what interests only him.” The perseveration has lessened from the days when he simply could not stop speaking. Now it’s more like memorizing city skylines and assuming everyone else wants to talk about them, too.
  • Repetitive behavior. As for physically repetitive behavior, occasionally Martin still jumps, or hops three times and runs one direction, then hops three times and runs back the other direction. The difference is that now he recognizes the behavior, and makes explanations, like, “I’m getting my jumps out so I’ll be able to stay still for taekwondo.”

All of that is pretty good—not to mention everything that’s so far gone I no longer think to add it to the list, like echolalia or bolting or lack of proprioceptive awareness.

But then there’s anxiety, the mountain so insurmountable that it’s driving me and Adrian to consider medical marijuana. For months, Martin has been clenching his fists, forcing his lower jaw forward, shouting, crying, opposite-talking (“I’m never using my iPad again! Throw it away! No, Mommy, don’t throw it away!”), and generally controlling our family time with his meltdowns (or threats thereof).

I’ve been hoping that moving to Nicaragua for a few months would alleviate Martin’s anxiety.

Three weeks into our summer, I’m pleased to report that I see progress.

We’ve had two very-high anxiety (and crabbiness) events. The first was July 4. We’d been in Nicaragua only three days. Adrian suggested a trip to Granada, a two-hour drive. Martin hated everything about the journey, couldn’t stop asking what we were doing and when we were going home, whimpered and whined through a boat tour on Lake Nicaragua.

After that, Martin did comparatively well until last Sunday, when he and I and a visiting friend made a day trip to Ometepe Island. Sunday morning was nothing short of a disaster. Even before we boarded the ferry at San Jorge, Martin sank into meltdown mode. The situation worsened when we arrived in Moyogalpa and found the driver we’d pre-arranged for an island tour. In the back seat, Martin lost control. He clenched his fists and jaw, lashed out at me, and screamed in English, “We’re never leaving Ometepe! Now we live here! Now we’ll be here forever!”—to the bewilderment of our driver, who spoke only Spanish. With effort, I got Martin calm enough to proceed through a butterfly sanctuary and then take a hike in the adjacent woods. Thank goodness we took that short hike. Something about the muddy path relaxed Martin. He went ahead of me and my friend (which I didn’t love, because we could hear Congo monkeys barking in the trees, and I had no idea whether they were dangerous) until he reached a clearing with a view of the lake. There he stopped and waited for us, and even posed for a couple pictures before declaring himself the “leader” and heading onward. Although Martin never got comfortable, the day improved from that clearing onward, at least until an arduous and uncomfortably overcrowded ferry ride back, which made him sensory-seeking.

 

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Martin, still unhappy as we headed into out post-butterfly hike.

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The view of Lake Nicaragua that seemed to mark a turning point in Martin’s awful day.

Those two events—Granada and Ometepe—notwithstanding, Martin has relaxed in Nicaragua. Somewhat. He’s still thrusting his lower jaw forward (if I can get him to chew gum, that helps) but not clenching his fists or complaining quite as much. He’s been speaking well to adults, even introducing himself. Day camp seems to be going well. We haven’t had many tears this week.

I’m noodling what might explain the limited improvement:

Limited social pressure. Without school, and especially until day camp started earlier this week, Martin didn’t have the same pressure to socialize.

Relaxed mom. We all know that I’m usually half the problem (if not more) when it comes to anxiety. With less on my agenda (I’m trying to cut down on work for the summer), and plenty of rest, I’m pretty chill.

Environment. There is activity afoot in Southwestern Nicaragua. But it’s nothing like the crowds and traffic and bustle of the Tri-State Area, even in the suburbs where we live.

Health. I don’t love Martin’s diet here. With less variety, he’s eating too many carbs (rice) and other sugars (fruits). On the other hand, I’m pleased with his regular ocean romps and exercise, including day camp, taekwondo, trekking, and pool swimming.

Biomed protocol. We continue treating Lyme disease and babesiosis, and we are ramping up the protocol Martin’s doctor set in June, which includes MC-Bab-2, Sida, and pau d’arco. Often we see improvement as we head into a new protocol.

We saw some anxiety this morning, as today was Martin’s first day-camp field trip—back to Granada, of all places! Stay tuned to FindingMyKid for additional Nicaraguan dispatches, including a follow-up on anxiety.

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This was the happier kid on the second half of our Ometepe hike. Later we had lunch and went swimming in volcanic mineral waters.

Exceedingly Difficult

I’m typing with my left hand. With only my left hand. It’s slow-going. I am right-handed, dominantly, not ambidextrously one bit.

My hair looks awful today. I managed to wash and condition (in a 20-minute shower, wasting water), but drying with one hand was hopeless. Hold the hair dryer, blow, drop the dryer, brush, retrieve the dryer, blow.

I can barely prepare food, because I can’t hold a knife to chop. Adrian had to buy his lunch yesterday and today, other than his lentils. Instead of mincing vegetables into meatballs, I made Martin’s lunches from buffalo chorizo, which contains high-sal ingredients. Martin had an anxiety-ridden day. I blame myself.

You guessed it: I broke my right wrist. I was playing tag on ice skates with Martin. Despite his protests and refusal to play hockey, Martin is still a better skater than I am, and with a lower center of gravity, and he was wearing hockey skates, while I had ancient rented figure skates. In retrospect, challenging him to a game of tag was—well, you can choose the right word.

I have to wear a bulky cast for six weeks, and the orthopedic surgeon is banning contact sports and weights for three months. B’bye, spring softball season. My personal trainer is designing some “cardio and legs” program to replace my lifting routine. I’m glad ski season is winding down.

I will try to keep blogging. But I’m still not sure even how I will feed Martin, so I can’t make promises.

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This is my arm! Why is the cast orange? Well, I do love Syracuse University.

Feeding Them Both

Forgive me another post on food. I don’t usually hit food twice in a row—I’ll make this one quick.

Many are the challenges to feeding a three-member family when the child is mostly Paleo/low-sal/meaty, the mother is vegan, and the father is primarily pescatarian and prefers salads.

The vegan, who prepares the food, comes last. I’ll pretty much forage the (vegan) scraps of what the other two eat, so let’s take me out of the equation.

Sometimes I can feed Martin and Adrian the same meal, as with the “anything” pasta. Other times, I make a main course for Martin and repurpose it into a salad dish for Adrian. I’ve got quite adept at this repurposing. Add sliced avocado, maybe some fruit and nuts, and voila!, fancy salad.

Yesterday I made the promised white-bean skordalia. (Remember? The cannellini beans I forgot to soak?) For Martin, I scooped a heap of skordalia onto a plate and inserted two dozen raw carrot sticks, which poked out in all directions. I called this creation (which I forgot to photograph) a “moon flower.” Martin removed and ate the carrot sticks, then finished the skordalia with a spoon.

For Adrian, I made the skordalia the major protein in a salad, with pine nuts for flair. I added mixed greens with his favorite dressing—olive oil mixed with chickpea miso—and macadamia nuts and diced cucumber on top. I had fresh strawberries, so I finished dressing the plate with fresh strawberries.

Happy kid. Happy husband.

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ASD Recovery Recipe: Anything Pasta

So I’ve discovered that I can make a decent pasta meal out of anything “vegetable” in my refrigerator. Like, virtually anything.

Last night I planned to make white bean skordalia. By the time I discovered that I forgot to advance-soak the cannellini beans, I had only minutes to devise another dinner. I surveyed the kitchen and assembled these ingredients:

->Carrots, with their green tops. I always cook the carrot greens. Once when I was checking out, the supermarket cashier casually snapped off the carrot greens and tossed them in a garbage bin. I promptly commenced a lengthy oration on the benefits of carrot greens.

->Red onions.

->Garlic.

->Celery.

->Toasted onion salt. With Martin’s current low-salicylate diet limiting spices so much, I’ve been trying to get creative with salt.

->Pine nuts. I avoid the pine nuts from China. I’m not anti-China, but I am concerned with shortcomings in China’s food-safety schema.

->Green lentil pasta.

I prepped the carrots (greens and all) and celery in a vinegar bath, then cut them into pieces and put them in my food processor. October 13, 2011, I wrote a post titled, “Kitchen News: An Update on the Hunt for a Food Processor With Glass Bowl,” which (based on total unique views) is the most popular post ever to grace this blog. Five-and-a-half years later, I am still without a glass food processor. I processed the carrots and celery almost to a paste. Then I chopped the onions and garlic roughly and added them to the food processor.

While the pasta was cooking, I heated a generous amount of oil and fried the finely minced vegetables. When they were almost done, I added onion salt and a scoop of pine nuts.

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Finally I drenched the cooked pasta in cold water to prevent mushiness and added it to the veggie pan.

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The resulting dinner was pasta coated in lovely crunchy-garlicky bits. Martin said, “Oh yes, this is delicious!” and Adrian ate every last bit from the pan.

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Must remember—“night in a pinch” will henceforth be known as “garlic pasta dinner.”

On Food and Genetics, and Judgment

Time to elaborate again on a comment response I made recently.

In response to my post about Martin’s golden week, I received this comment from a reader:

We are not on a biomed path as our son’s extremely restrictive food choices preclude this. Also his autism is visible throughout our family tree and heritable traits probably can’t be eliminated entirely by an altered diet. However our son’s behaviour varies considerably depending on who is looking after him and how secure he feels. Not all sides are helpful . . . while low-sal may well be helping don’t ignore the effect of his environment out of hand. There’s a lovely book called Uniquely Human about this sort of thing [that] might be worth a look. Thanks for writing—we are on a path much more to do with movement than food due to our family’s ASD presentation but we have the same burden of analysis and choices as you seem to! Bonne Chance

This was my response:

Thanks for reading! A few thoughts on your comment: I agree that environment is also relevant, and we pay a great deal of attention to environment and behavioral assists. But seldom (in my experience, never) do they yield an immediate effect; a substitute aide does not make a great day, or week—though a new aide certainly can change the course of the year. In terms of the biomed path, I don’t know of any child whose autism was corrected entirely by an altered diet. Diet is only the foundation of the healing path. Moving along that path requires supplementation, methylation assistance, detoxification, etc., specific to the child.

Genetic and inheritable traits also play a great role in my son’s condition. I would be naïve to think otherwise. Both my brothers have immune disorders, and psychological/psychiatric conditions (which I now would call health conditions) are endemic in my family. That does not mean my son’s autism cannot be lessened, if not resolved, through biomed. Epigenetics, neuroplasticity, and all that I know about the science of healing suggest otherwise.

In terms of your son having extremely restrictive food choices—well, that brings me to a paradox. In my experience working with biomed families, children who restrict their food choices are usually the biggest beneficiaries of biomed, once it gets going. The food aversions, which often have underlying digestive causes, tend to disappear once the irritants are removed from the diet. I would encourage you to give it a try!

But even if it’s not right for your family, that’s okay too. It sounds like you are doing a lot for your son in any event, and I hope it will get him where he needs to be. Whatever approach we take, we are all in this together.

These are the three points I’d like to discuss further:

  1. Picky eating is a reason to pursue biomed and dietary changes, not a reason to discount them.
  2. Genetics don’t always get to write a child’s future, at least not every aspect of the future.
  3. If picky eating or genetics are keeping you from pursuing biomed and/or dietary changes, that’s okay.

As to point 1—“There is no way I could do a gluten-free or dairy-free diet, because my son will eat only cheese tortellini, breaded chicken nuggets, and pretzels.” “I tried a special diet once, and she didn’t eat for three days. Literally. Finally I gave in because she would pass out otherwise.” I hear these statements frequently when other special-needs parents find out that we do biomed. I also hear their corollary, the failure-to-thrive argument: “My son is so skinny and small for his age, even though he eats a ton. I have to give him milkshakes constantly just to keep his weight up.”

Years ago, I attended a presentation by Dr. Arthur Krigsman. (Yes, I know Dr. Krigsman is controversial. At this point, I find that many doctors doing research and providing non-pharmaceutical medical treatment to children with autism are called quacks. I’ve had to get past that and start making my own decisions.) Although biomed parents (as far as I could tell) filled much of the audience, Dr. Krigsman was speaking as part of a panel discussion aimed primarily at physicians, and therefore much of what he said went over my head. I think I understood him to say that many children on the spectrum exhibit lesions and inflammation throughout the digestive tract, including in the esophagus and stomach. Dr. Krigsman calls this condition “autistic enterocolitis.” These lesions, like so much of what affects our children, originate from unbalanced immune response to normal gastrointestinal action. Picky eating, or food aversions, might be a sign of pain from such digestive troubles: Kids express their hurt by avoiding the foods that exacerbate that hurt. In such a scenario, a kid who is not eating, or is severely restricting his own diet, needs biomed. Like, really, really needs biomed, or some form of medical intervention to begin healing the digestive tract.

Speaking from my own experience, when Martin was young, before we started biomed, he “postured”: He would bend forward with his stomach tight and his fists clenched at his side. He also slept with “elevator butt.” (I stole that term from one of my law school classmates, who used to scratch the base of my cat’s tail, then yell “elevator butt!” when the kitty straightened only her back legs.) Martin frequently slept with his face smashed into the mattress and his butt in the air, as if to relieve pressure on his gut. Both the posturing and the elevator butt ceased within a few months of dietary changes. Whether he actually had enterocolitis, or just some lesser form of irritation, I don’t know. But he was in pain, and a restricted diet relieved that pain.

During Dr. Krigsman’s presentation, I couldn’t help but think of “Jonas,” a boy I know with undiagnosed behavioral issues that resemble seizure-related oppositional defiant disorder. At the time, Jonas would eat nothing but processed yogurt drinks or green shakes. I searched for a way to raise the issue of entrocolitis with his mother, a single woman constantly overwhelmed with managing Jonas’s behaviors and shuttling him to various therapies, including eating therapy. I never found the right moment, or non-threatening way, to bring it up. I consider that a shortcoming.

I don’t believe that “autistic enterocolitis” is the only reason a kid on the spectrum might avoid foods. Martin’s friend Bobby, who is on a GFCFSF diet, limits himself even further because of taste and texture issues. He will not eat soft or chewy foods. Martin himself would be happy to repeat his two or three favorite foods every meal. I consider that a form of perseverative behavior. Again, these are issues best addressed (in my world view) through biomedical intervention, to resolve what’s causing the aversions or perseveration—although I don’t discount the complimentary role of behavioral therapy, such as RDI.

As to the child who allegedly needs milkshakes to put on weight, if a boy eats and eats but cannot gain weight or grow taller, plainly he has a health problem that is not being addressed. His body is not processing the food’s nutrition adequately, which means he probably isn’t getting the foods that his body can process. Which brings me to dietary changes . . . .

As to point 2—I have heard from parents who say they don’t have any reason to bother with biomed because genetic mutations are to blame for their child’s autism. I get that. I really do. Once you discover what havoc genes can wreck, it can feel almost pointless to try altering the course. Even without the genetic component, it can feel almost pointless. I’ve been at this six years, and we aren’t “there” yet, wherever the heck “there” is. But consider two factors. First, genetics are often a predisposition, not a path certain. Genetics might set the stage, but environmental factors often raise the curtain. You know my favorite environmental villains: processed foods, glyphosate, pesticides, C-sections, antibiotics, vaccines (gulp! I said it again), pollution. Carrying the silly set-the-stage analogy further—if environmental factors raise the curtain, then altering the environmental factors can change lower it again. Even if, for example, a vaccine activates an MTHFR mutation, interventions to restore the immune system can calm the mutation.

As I wrote in response to the blog comment above, I recognize the role Martin’s genetics played in his development of autism. Without going into too much detail (even though FindingMyKid is written anonymously, I feel icky about compromising privacy), my family has genetic gifts—for example, we are “book smart” and breeze through standardized exams, and we are not prone to obesity—and shortcomings. Both my brothers have immune disorders. The elder suffers from a wide range of food and environmental allergies, plus eczema and chronic bronchitis. The younger has environmental allergies. Long before I produced Martin, I myself fell victim to depression, a disease also prevalent in my husband’s family. There’s addiction on both sides of the family tree. So when it comes to immune and related disorders, genetics were not in Martin’s favor. Genetic testing has confirmed the existence of mutations that make him susceptible to autism.

As I understand the history, decades ago we might have been advised against vaccinating Martin at all, based on immune disorder in the immediate family. Let’s add that Martin’s vaccinations followed Pitocin, loss of heart rate during labor, an unplanned C-section, antibiotics in the NICU, and plenty of immune insults I don’t need to repeat again.

The way that I look at it, Martin’s genetic predisposition to immune disorder made him vulnerable to the effects of environmental factors, and now makes our path to recovery more arduous. But it is no reason to abandon him to (perceived) fate.

Then there’s the matter of epigenetics. According to this helpful webpage, epigenetics is “the study of potentially heritable changes in gene expression (active versus inactive genes) that does not involve changes to the underlying DNA sequence—a change in phenotype without a change in genotype—which in turn affects how cells read the genes.” That means that environmental circumstances can cause genes to be silenced or expressed over time. We can influence which genes express themselves, and how. I’d like to seize that power, to whatever extent I manage.

As to point 3—I’ve said this from time to time, and it bears repeating: You don’t need to approach autism biomedically to be my friend. Doesn’t that sound ridiculous? Because this is a blog about biomedical recovery from autism, and because I unabashedly favor biomed, I worry that I must come off as an intolerant person. Since FindingMyKid is written anonymously, I have to ask you to take my word for this: My blog personality and my live personality are different. By now, a large percentage of my acquaintance comprises families affected by autism. Half of those families, I estimate, are pursuing biomedical recovery. The others are not. It’s like having friends who don’t love the New York Rangers, or even hockey in general. I prattle about the Rangers, they listen kindly, and then we find connection in whatever petty topics non-hockey people enjoy. When it comes to friends who have children on the spectrum but don’t pursue biomed, I answer questions (when asked) about what we are up to, I ask what they are up to, and we find connection in the stuff we both know, like sleepless nights, IEP meetings, adaptive sports.

I had the advantage of implementing dietary changes when Martin was just two years old, when he was more malleable. Maybe you don’t want to change your child’s diet because he’s picky, or underweight, or you’re skeptical about biomed. Or maybe dietary changes are too much to manage with a large family, or small budget, or unsupportive co-parent. Maybe knowing your child’s genetic make-up has convinced you that biomed interventions would be fruitless. Maybe you are making satisfactory progress with behavioral therapies. That is totally fine.

Judgment does not become us.

Boom! Booh-Yah!

I got around to posting “Eureka!,” about Martin’s potential salicylate intolerance, only yesterday. I try to keep Finding My Kid as current as possible. Alas, in this case, I’m behind schedule; we’ve already been doing the low-salicylate diet for a week-and-a-half, since Tuesday afternoon, January 3.

Last week, the first week, Martin seemed better than when we were skiing. The difference was mostly ephemeral, so I wasn’t sure if I might be imagining a change, to fit my own salicylate narrative. He had fewer meltdowns, I thought. He seemed more connected. But he was still perseverating plenty, so I wasn’t sure. The weekend went well. My brother Eddie came for a visit, with the express purpose of taking Martin to the City to do whatever he wanted. The two of them were gone all day, Saturday. Eddie reported no problems.

Then came Monday, the seventh day of a low-salicylate diet for Martin. To my surprise, Martin came home from school with a special note from his teacher, which read, “Mrs. N— is so proud of my amazing day! Martin worked so hard and had a wonderful day!” The note was accompanied by a math test—all word problems—on which Martin had scored 100%, and because that night’s homework was “correct the math problems you missed,” Martin had no homework. Monday afternoon, Martin went to his taekwondo class and performed—not “well,” per se, but better than usual.

Tuesday, I accompanied Martin’s class on a field trip. Martin was clingy, from the unusual circumstance of having me near him during a school event. I wouldn’t say he had a fabulous day. He melted down during a presentation by a museum administrator, who summoned several children as volunteers but refused to call upon not the over-enthusiastic Martin.

Wednesday I received a text from Martin’s behaviorist, who was in the classroom: “Another great day again. More independence, better attention, quicker work completion, better staying on task, increase in social initiation.” Wednesday afternoon came another note in Martin’s backpack, from his teacher. This one, which was on his daily evaluation sheet (the Monday note was on a regular blank page) read: “Martin had an amazing day today! So proud of him J —Mrs. N—.” In the row for “Partner Work” was an additional note: “worked really well with his math partner!”fullsizerender-4

Thursday brought another victory. The note, on Martin’s daily evaluation sheet, read: “Super day today, again! Mrs. N— is so proud of Martin! J” In the row for “Partner Work” was written “Great partner work today,” with a smiley face formed from two exclamation points.fullsizerender-6

Thursday evening, after work, I spent an evening on the town with a group of fellow special-needs moms, and Adrian was in South America on business, so Martin’s babysitter Samara stayed with him. Samara was preparing dinner when Martin took snuck into the kitchen and stole an organic mango Samara had peeled and sliced for herself. Samara texted me immediately to say Martin had eaten the mango while she was distracted and she hoped it wouldn’t interfere with his new diet. After a flurry of iPhone research, I replied, “Good news! I just looked mango up, and it’s ‘moderate’ salicylate—so not good but not as bad as it could be.”

Apparently, however, it was enough. At 9:13 pm, Samara texted me, “He is still awake but in bed already. He’s laughing for no reason. Sí. I guess it was the mango.” Martin was still awake when I arrived home after 10:00 pm. I went to check on him and found him in the laundry bin in his bathroom. I asked, “What on earth are you doing?” He replied, “Well, I’m sitting here in this laundry bin.”

Given Thursday night’s post-mango escapades—as far as I can tell, Martin fell asleep around 10:40 pm, some three hours after bedtime—I feared that Friday might be rough. No indeed. This daily evaluation sheet came home:fullsizerender-5

Please, examine that sheet carefully. The daily evaluation sheet that Martin’s behaviorist devised rates him in various categories—“followed routine directions,” “raised hand and waited to be called on,” &c.—on a scale from 1 to 5. A 1 means “heavily prompted.” A 5 represents “excellent independence,” or as the behaviorist described it to me, a 5 means that Martin performed on an independence level similar to any other kid in his (mainstream) class. Friday’s evaluation sheet rated Martin a 5 in every category, both morning and afternoon. That means, on Friday, according to Martin’s teacher, Martin performed at a level similar to any other kid in his mainstream class. A level similar to every other kid. The evaluation was accompanied by yet another handwritten note: “Another amazing day today! ❤ So proud of you!!”

Let me add, if I may, that I do not usually receive handwritten notes from Martin’s teacher. Each of these was special, and unique.

Now, there are caveats. First, I have not been seeing the same kind of super-improvement at home, or in Martin’s after-school activities. His meltdowns have decreased, homework is going well, and he seems less irritable. But I would not affix an “amazing” label to his home behavior. Maybe he’s taking advantage of me. Second, Martin has been having trouble falling asleep. This week he was up until 9:40 pm, 10:30 pm, even near midnight once. As a result, he’s been tired and lacking some focus. So I can’t say everything is fabulous. In any event, at school the trajectory is upward. Dramatically upward, apparently.

Here’s a funny addendum. At least it’s funny to me, and probably to other biomed parents. Wednesday, Martin’s behaviorist, who knows we do biomed, texted me from his classroom, which she visits once per week. She wrote: “Another great day again. More independence, better attention, quicker work completion, better staying on task, increase in social initiation. Supplements kicking in? Only difference here is aide is out again.” With that last sentence, she meant Martin’s one-on-one aide, who was absent all week with flu.

I wrote back: “No—believe it or not, over Christmas break, I think I discovered that Martin is salicylate-intolerant. I’ve been cutting all salicylates from his diet—and now these results.”

The behaviorist responded: “I can’t keep up with all his allergies and intolerances anymore. What can this poor kid eat?”

I explained what salicylates are and assured her that Martin is still finding plenty to eat (more on that later). Then I expressed my enthusiasm for how much this new dietary tweak seemed to be helping.

The behaviorist, evidently skeptical, went in a different direction: “The other variable is the teacher and I are really trying to pull Martin’s aide back further. She goes through periods of hovering. And I think it stresses him out. The substitute aide isn’t being utilized very much. I think the more freedom relaxes him and that could be the factor as well.”

Aha! Martin’s school performance just bumped not because we discovered a salicylate intolerance and took action, but because he has a substitute aide. Cue the eye roll.

Eureka!

Salicylates.

They are the compounds in many plant foods that keep them from spoiling. Most fruits, and some vegetables, are salicylate-rich, as are virtually all spices, with turmeric/curry being among the worst offenders. Animal products (meat, eggs, dairy) are low-salicylate unless they’re spiced or cured. According to my research so far, just about anything fermented is high-salicylate.

According to “drugs.com,” salicylates (in their synthetic form?) do more than delay food rot:

Salicylates are nonsteroidal anti-inflammatory drugs. They inhibit the synthesis of prostaglandin and other mediators in the process of inflammation and have anti-inflammatory, antipyretic and analgesic properties. Salicylates can be used to reduce fever, pain and inflammation such as in arthritis.

In any event, salicylates can cause food sensitivities. The Feingold Diet, an elimination diet popular among parents of children with behavioral challenges, recommends cutting salicylates (along with additives, colorings, and other irritants) then trying higher-salicylate foods one-by-one to test tolerance levels. I’ve found a handful of websites dedicated to low-sal diets—that’s the lingo, apparently, to avoid pronouncing “salicylate” constantly—including this one and this one. Some people try, miraculously, to manage a low-sal SCD regimen.

The last week of 2016, we were skiing again, in Park City, Utah. Christmas day we flew from New York City to Salt Lake City and spent the night in a downtown hotel. The next morning we drove to Park City and picked up our rental skis. That afternoon, as Martin took a lesson at the National Ability Center and Adrian skied a few initial runs, I went to the Whole Foods Market and stocked up to cook for seven days. We reconvened at our rented condominium, had dinner, and hit the sack.

Martin had been having a troublesome few months, as you may know. When Martin is having a tough time, even if he’s sleeping well (which, these days, he almost invariably is), I often find myself awake during the night, fretting. Such was the case that first night in Park City. I woke around 3:30 am (which is 5:30 am in New York, just about when I usually get up) and couldn’t go back to sleep, so I moved to the sofa with my iPad and started reading.

I’m not sure why I felt compelled to navigate directly to salicylates. I’d thought about salicylates once or twice in the distant past and, for whatever reason, not pursued the topic, probably because I was onto some other next big thing. But this occasion, in the wee hours on a Park City sofa, I read a page about salicylate sensitivity, then another. And another. And another. I read about hyperactivity. Anxiety. Sensitivity. Uncontrollable laughter.

I thought, “This sounds like Martin. This sounds a lot like Martin.”

Martin’s diet has been clean for years. We’ve done GAPS, modified GAPS, SCD, and custom variations to account for mitochondrial dysfunction. We’ve made much progress toward heal Martin’s gut; he no longer “postures,” his belly is flat, his bowel movements are works of art. Still, he exhibits physical manifestations that may be food-related, like occasional shiners and visible inflammation. I’ve taken him recently for allergy testing, both traditional and naturopathic. I’ve discovered the beef allergy and a few others, including horses (riding them, not eating them, though there was once an unfortunate incident in South America when Martin ate some jerky after I failed to recognize the local word for “horse”). I avoid what I’m told to avoid.

But I’ve never put Martin on a low-sal diet.

By this time it was 4:30 am. I texted my friend Stacey, “I think Martin might be salicylate-intolerant. I really think I might be onto something.”

Her reply came hours later, when we were already skiing: “I don’t even know what that means, but hey glad you’re getting somewhere.” To the extent one can hear frustration in a text message, I heard some frustration in hers. I know she’s been having an even tougher time with her son, and feeling like they aren’t making much progress toward recovery.

That evening, I texted back, truthfully: “At the moment, I’m getting nowhere. He’s a complete disaster today.” I mean, why did you think I was texting you about salicylates at 4:30 am? “But I’m going to try removing salicylates from his diet and see what happens.”

I couldn’t put my low-sal plan into effect immediately. I’d already spent hundreds of dollars at the Whole Foods Market, stocking us up for the week. I had freeze-dried pineapple (high-sal!), fresh sweet potatoes (high-sal!), Lärabars (dates and almonds, high-sal!), coconut oil (extra high-sal!). Plus, I couldn’t find just one website that compiled all the salicylate contents that I needed to know about. Nori seaweed? Ground flax meal? Kohlrabi? Who could give me these important facts? I spent my evenings, after skiing and cooking, surfing around to put together the most comprehensive list I could. Different sources even disagreed on the salicylate content in some foods, like cauliflower and parsley.

I searched for a low-sal cookbook and finally located one, which needed to be sent from New Zealand. I ordered it immediately.

I returned to the Whole Foods Market and picked up lower-sal safflower oil—the store didn’t have the sunflower oil I was looking for—and white potatoes for breakfast. For the ski week, I managed what I would call “reduced-salicylate” but not “low-salicylate.” Martin had turkey bacon (unacceptable for celery salt and spices) and bison hot dogs (same), plus carrots and other medium-sal veggies. His mountainside snacks were still the nut- and seed-based products I’d brought to Utah or purchased on-site, though I did make an effort to send the cashew (low-sal) versions instead of the almond (high-sal) versions.

Our second-to-last morning in Utah, when I was almost out of food, I made Martin a “breakfast tortilla,” which was peanut butter spread between two almond tortillas and fried. Peanut butter is medium-salicylate, and almonds are high-salicylate, making this breakfast the largest serving of salicylates he’d had all week. Midway through breakfast, Martin started laughing. Laughing so hard he could barely get food into his mouth. Laughing so hard he needed to leave the table to jump. Martin laughs inappropriately, often. But this was of a new magnitude.

I asked him what was going on. He replied, “I don’t know! I can’t stop laughing!”

Uncontrollable laughter. Was this salicylate-related? When Adrian emerged, from the shower, I relayed what had happened. He could also see for himself, as Martin was still laughing. We decided immediately to explore a low-sal diet to the fullest. Adrian said, “I support this. Let me know what you need from me.”

We arrived home late Monday night, January 2. Tuesday morning, I went shopping. This first shopping venture in the low-sal world felt strange. Martin will be eating starchy foods he loves that previously I kept in strict moderation, like potatoes and rice. For cooking, the only plant-based oils I use at home have been raw coconut and extra-virgin oil, both of which are extremely high-sal; now, along with rendered animal fat, I am urged to use sunflower or rice-bran oil, and even (gasp!) the refined forms. Honey, with all its beneficial properties, is out now, even manuka honey. Lower-sal sweeteners are the more refined forms, like sugar cane. (No way. I’ll be sticking to maple syrup and maple sugar, which are allowed.) No more fruit, except papayas, bananas, peeled pears, and peeled golden delicious apples.

Of course, I wonder why Martin is salicylate-sensitive now (if in fact I’m correct). Has he always been this way? Is it new? Will I ever know? Martin is a never-ending series of “why now?”

The cookbook from New Zealand arrived quite promptly, considering the distance it had to travel. I opened it with alacrity, ready to get to work.

. . . And found that virtually every recipe contains (gluten) flour or dairy. Most recipes contain both.

Looks like I’m back to improvising.

What Does a Beef Allergy Have to Do With Lyme Disease?

Although contrary opinions exist, it seems like a tick bite is not the only way to get Lyme disease. A pregnant woman can pass Lyme disease to her unborn child. Other forms of person-to-person transmission are possible, including even transmission sexually. Lyme disease can also be acquired from insects, or (non-tick arthropod) spiders, or theoretically from a blood transfusion.

A tick bite is, however, the most common way that Lyme disease is transmitted.

Something else a tick bite can cause is a red meat allergy.

Seriously?

Yes, seriously. From the American College of Allergy, Asthma, and Immunology (ACAAI):

“A bite from the Lone Star tick can cause people to develop an allergy to red meat, including beef and pork. The Lone Star tick has been implicated in initiating the red meat allergy in the US and this tick is found predominantly in the Southeast from Texas, to Iowa, into New England. A meat allergy can develop any time in life. If you are allergic to one type of meat, it is possible you also are allergic to other meats, as well as to poultry, such as chicken, turkey and duck.”

Fabulous! So far Martin has shown the allergy only to beef. On several occasions, eating beef has left him with red spots around his mouth and onto his chin.

 

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Along with my own empirical observations, traditional (patch) testing has pointed to beef allergy, along with milk allergy. I suppose that could be the real link; the same ACAAI website (linked above) says: “Studies have found that a very small percentage of children with milk allergy are also allergic to beef.”

But, if it is Lyme, look at that list—“other meats, as well as to poultry, such as chicken, turkey and duck.” Will we need to cut all those? I’d like to say that maybe Lyme disease will return Martin to veganism earlier than planned. I can’t say that, though. Martin loves seafood. When asked, recently, to name his five favorite foods, this is the list he came up with (in order):

  1. Octopus.
  2. Calamari.
  3. Fish.
  4. Lollipops.
  5. Shrimp.

Don’t even get me started about the fact that my son’s favorite food is an intelligent, advanced creature like the octopus.

The Lyme-beef link, best (?) evidence suggests, lies in “Alpha-Gal.” From PBS:

Though it hasn’t been scientifically proven, researchers think the Lone Star tick produces a sugar from its gut called galactose-alpha-1,3-galactose, or “Alpha-Gal.” In some cases, the human immune system develops an allergic response to that sugar. Because Alpha-Gal is also found in red meat, a bite by the Lone Star tick may translate to an allergic reaction to anything from beef hamburgers to bacon. Repeated tick bites can potentially cause the antibody level of Alpha-Gal to rise, worsening reactions.

That explanation would make sense for Martin, whose immune system has been presenting all sorts of new allergies, some that befuddle me still.

For now, no beef for Martin. Because he hasn’t (yet?) presented with allergic symptoms to other mammalian meats, I’ve substituted bison or elk in his meatballs. I also use turkey—but no chicken at this time, because according to naturopathic food-sensitivity testing, we should be avoiding chicken. The naturopathic testing seems like so much hocus-pocus, sometimes, but what the hey? I mean, if a tick can make my son allergic to cow, who am I to say what’s real anymore?

Daily Meatballs

Most school days, I pack meatballs for Martin’s lunch. Specifically, spicy buffalo meatballs, which I make by combining bison chorizo with minced vegetables. I send spicy buffalo meatballs for four reasons. First, Martin finishes them. I don’t have to worry about lunch coming home half-uneaten. Second, they are easy, insofar as one package bison chorizo, plus vegetables, makes a three-day supply, which I prepare in advance, leaving only the cooking for the morning before school. Third, they keep well and are not a food that becomes soggy or unattractive in the hours before lunch break. Fourth, they fit well within the cycle of Martin’s diet. He eats meat no more than once per day; tucking the meat meal into the school day frees me to prepare a vegan dinner for the whole family.

Yesterday evening, I made sweet-potato-and-lentil shepherd’s pie, which was a triumph, unlike last week’s disastrous attempt at vegetable-and-white-potato shepherd’s pie. The triumph went quickly:

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In sum: spicy buffalo meatballs. Lots of spicy buffalo meatballs.

Last night at dinner—the aforementioned shepherd’s pie—Martin said, “Mommy, would you stop sending meatballs to school all the time? Sometimes I want something different.”

Readers, what a moment! How much do I love that my son has the functional language to express his preferences and advocate for himself? How much do I love that he wants variation? Immediately I recalled a news piece I once about a young adult on the spectrum, living independently, who was anxious to date but impeded by, for example, the fact that he refused to eat anything but canned tuna for dinner.

“What would you like instead of meatballs?” I asked Martin.

“Rice,” he answered. Of course. I limit rice in Martin’s diet, and he schemes for any opportunity to get those little grains into his mouth.

I said, “Your point is well-taken. I’ll see what I can do.”

This morning we were late for the school bus. We were late because I needed some extra time to make Martin’s lunch:

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Addendum on the topic of last week’s disastrous attempt at vegetable-and-white-potato shepherd’s pie. That recipe didn’t work at all, turned out bland, and my last-minute efforts were insufficient to inject any pizzazz. Plus, the recipe made too little potato topping and too much inside filling. I was, however, able to salvage a small victory. I removed the extra filling and processed it into a paste. The next morning, I spiced the vegetable paste, combined it with an egg, and fried the batter into savory pancakes. Martin loved the makeshift breakfast.

 

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More… Inclusive

Three months ago, I reported that food is easy. Food became easy when I shifted from a “replicate what we used to eat” and “recipe” model to a minimalist model, like “(Brussels sprouts + oil + salt) + (lentils + paste[onion + ginger + garlic + turmeric+spices]) = meal.”

I’ve had another shift when it comes to ingredients. For years I’ve thought of cooking for Martin in terms of what I can’t use. I began with, “What would I like to make?” and proceeded to, “What are the ingredients I will have to substitute?” Example: “I’d like to make muffins,” followed by, “Grain flour. And right now, chicken eggs.”

We’re supposed to be avoiding eggs again.

Now, by contrast, I’m launching meals from a new spot. The ingredients come first. I begin with, “What foods will be healing and provide Martin with the particular nutrition he needs today?” and proceed to, “How can I combine those foods into a meal?” Example: Last night I checked the kitchen. Fresh food I had on hand that Martin could eat included peppers, onions, garlic, butternut squash, apples, romaine lettuce, cauliflower, celery, duck eggs, cashew cheese, bison chorizo, and bone broth. In the pantry I had a variety of nuts, along with rice crackers, LäraBars (Martin’s fave), and cookies I’d baked from almond flour, maple syrup, vanilla, baking powder, raisins, and almond chunks.

Today’s menu for Martin:

Breakfast: duck egg cups with peppers and onions; fresh juice made from romaine lettuce and apple.

School snack: Lära Bar.

School lunch: bison chorizo meatballs with added peppers; homemade cookies for dessert.

After-school snack: rice crackers with cashew cheese.

Dinner: cauliflower “fried rice” (no actual rice) with peanuts added for protein; bone broth. In the cauliflower rice recipe, I substituted celery and squash for peas and carrots (making do with what I had), and coconut aminos for soy sauce, since Martin can’t have soy.

So go the days, now. What do I have? What’s good for Martin? From those, what can I prepare?

Tomorrow’s breakfast forecast is nut butter between two almond-flour tortillas, fried in coconut oil and cut into six wedges. School lunch is shaping up to be vegetable lentils with quinoa. Salmon is defrosting for dinner, to be paired with cultured veggies. It’s a pretty good forecast.

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The cauliflower rice for dinner. Not too pretty, but Martin ate the whole bowl without pausing.

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This is not actually the breakfast I served that day, which I forgot to photograph. This is, however, pretty typical for breakfast: coconut-flour berry muffins with homemade veggie-fruit juice.