Fish. It’s What’s for Breakfast

Posted on April 12, 2018 by findingmykid

Fellow parents who do biomed, or are familiar with Martin’s diet, like to ask me what Martin eats for breakfast. Deep in our psyche sits a notion that breakfast, especially a kid’s breakfast, must involve cereal, porridge, toast, muffin, eggs, and milk or yogurt, and we seem to have trouble fathoming breakfast for a kid who eats none of those except eggs, which he really doesn’t like.

My idea of “breakfast foods” has expanded in our seven years of biomed. I decided to snap pictures—I know I’m not much of a food photographer, especially when I have only five-to-seven seconds before Martin sits and starts eating—and assemble a breakfast post.

Without further ado, I present seven samples of Martin’s breakfast:

Fritters are always a popular choice. These were made with leftover spiced red beans, flattened and fried. The fritters are joined by pineapple and a green smoothie of cashew milk, coconut yogurt, dates, banana, peanut butter, and spinach.

Weekend extravaganza. In order, bottom to top: rice toast, fried potato slices, egg over-easy, turkey bacon, avocado, and porcini mushroom salt. I love my fancy salt infusions. This meal was too complicated. Adrian loved the concoction. Martin was kind of—meh.

Simple weekday breakfast. Leftover Mexican-style beans wrapped in almond-flour tortillas and fried. The smoothie is cashew milk, cashew yogurt, matcha green tea powder, and a handful of salad greens.

More fritters, this time zucchini and egg with carrot greens. The smoothie is coconut milk, dates, spinach, and moringa powder.

Hands down, Martin’s favorite breakfast food is smoked salmon. Now that I’ve learned that freezing below -10 degrees Fahrenheit for a few days renders the fish safe (in terms of parasites), I’ve allowed salmon back on the menu. Here is is served with sweet potato hash browns. The smoothie is cashew milk, coconut yogurt, banana, almond butter, and spinach.

Not the prettiest picture! But probably Martin’s second-simplest breakfast entrée (after smoked salmon with olives): banana halved lengthwise, rolled in almond-flour tortilla with peanut butter and cacao nibs, and fried.

If I want to make sushi for breakfast, I will make sushi for breakfast. Here, I packed the short-grain rice into a silicon “mini-donut” mold, filled the middle with mashed avocado, then wrapped the packet in nori seaweed and sliced salmon, then rolled the still-exposed rice in sesame seeds.

This was prepared most for Adrian (Saturday morning, pre-gym) and made him much happier than it made Martin. Bacon and vegetables under a shredded sweet potato fritter, topped with fried egg. I absolutely detest cooking pig meat. Few things make Adrian happier than bacon.

This is unusual, thrown together when we were running late. On the plate are almond-flour English muffins with a thin coating of maple butter. The smoothie is coconut milk, kale, banana, and avocado.

Pretty self-explanatory, for a change. Turkey bacon accompanied by fried potatoes with carrot greens. The smoothie is coconut water, avocado, raspberry, and lucuma powder.

That pesky salmon again! This time with a side of garlic broccoli. The smoothie has almond milk, coconut yogurt, leftover white beans (really), matcha green tea powder, frozen banana, and salad greens.

Salmon. It is a lot of salmon. Fried potato and sweet potato with rosemary. Black-rice toast. The smoothie is coconut water with pineapple, banana, mango, and avocado.

This was a plate I assembled last week while we were traveling in England. The breakfast comprises cold shrimps, pineapple, and red lentils with vegetables. In the wooden spoon are Martin’s breakfast pills. In the smaller glass is his morning “herx water.”

Chances

Posted on October 25, 2017 by findingmykid

My approach to Martin’s food continues to evolve.

In the earliest days, I would say, Martin’s diet was one of restriction. No grains, dairy, soy, corn, refined sugar, starchy vegetables, or fruits other than pear and avocado. No colors or sweeteners, no packaged or prepared foods, nothing from a restaurant. My mindset was mired in what he could not eat, and I concocted elaborate replacements for “usual” foods. This was a time of homemade zucchini seed “French fries,” sunflour patties, and duck nuggets; as long as the dish didn’t have any no’s, and seemed vaguely like a familiar food, it was a yes.

As I learned more about Martin’s particular needs, we ventured into specialty diets: GAPS with its endless broths, the Specific Carbohydrate Diet, low-salicylate, which brought us more potatoes and less coconut oil.

At some point, food became easier when I focused on simplicity: fewer replacements and complicated recipes, more limited-ingredient masterpieces.

This summer in Nicaragua, I was able to confirm that fruit doesn’t have to be our enemy anymore—after fruit had been relegated to that role for years by Martin’s tendency to yeast overgrowth. Also, through trial and error, I brought back in some of the higher-salicylate items formerly removed.

Now, back in the States with access to an embarrassing range of organic options, my motto has become: “Every meal, a chance to heal.” Martin is still gluten-, dairy-, soy-, and refined-sugar free, and his food is mostly homemade and organic. But I’m focused less on how to replace what Martin can’t eat and more on how I can pack fat, protein, and nutrients onto his plate while still keeping the meals delicious.

For exemplar purposes, I photographed this morning’s breakfast preparations. These were the ingredients, as I prepared them—

Fritter mixture (sweet potato, onion, garlic, carrot tops), pineapple, strawberries, orange, avocado, egg.

You see orange slices, strawberries, 1/4 avocado, one egg, and a bowl with shredded sweet potatoes and minced onion, garlic, and carrot greens. That’s a lot of vitamin content, plus the healthy fat of avocado and protein of egg. Tell me that you’re asking yourself what kind of lunatic arranges the prepared ingredients in a pattern on her cutting board? Only when I’m operating “for exemplar purposes.” Keep up. Next I whisked the egg in a glass with Himalayan pink salt and stirred it into the sweet potato bowl.

Fritter mixture, now with egg. Ready to fry!

Then I juiced those orange slices in preparation for Martin’s smoothie. Because it so fibrous, orange is one of the few fruits I won’t add whole to a smoothie. I usually use coconut water as the base of Martin’s breakfast smoothie; this morning, I had oranges to use up and so substituted orange juice. I put the orange juice in the Vitamix with the avocado and strawberries. I add avocado to every smoothie, healthy fat that Martin doesn’t taste. (I’m also finding new ways to disguise spinach and kale.)

Getting the pulp out of the oranges.

Finally I formed patties from the shredded-sweet-potato mixture and fried them in olive oil. Breakfast looked like this:

Voilà! Crunchy sweet potato fritters with fruit smoothie. Breakfast is served.

That’s a common weekday breakfast. Here are some other examples:

Berry smoothie with “egg muffin” (diced vegetables, spices, and egg baked in ramekin) and salted roast potatoes.

Tropical smoothie with “egg muffin” (diced peppers, parsley, and spices with egg, baked in ramekin) and potatoes with carrot greens.

Tropical smoothie and squash fritters, made with onions and red palm oil for rich color.

I still tend to put Martin’s meat serving—if he has one, on a given day—into his school lunch. Today, lunch was turkey meatballs, filled with peppers and leeks. For dessert, homemade meringues (egg whites, vanilla, arrowroot, maple sugar). For snack, a Lärabar.

Tonight was a slow-cooker dinner. Late morning, I diced whatever “autumn” vegetables were in my fridge, and added late-season tomatoes and herbs from my garden. That mixture went into the Instant Pot, together with red lentils, spices, and vegetable broth.

The dinner ingredients. I had such fun laying out the breakfast ingredients for display that I figured I would continue the trend.

Dinner into the Instant Pot to slow cook.

Of course, not every meal is a vegetable powerhouse. Convenience can play its role. Some mornings, breakfast is a smoothie plus “pizza,” i.e., peanut butter spread between Siete grain-free tortillas and fried in macadamia nut oil.

Finally! A green smoothie. This one has spinach, cashew milk, coconut yogurt, peanut butter, and frozen banana.

Some evenings, dinner is brown-rice fusilli with “cheese” sauce, in this case served alongside Indian-spiced chickpea fries.

This is like the ASD-recovery version of mac-‘n’-cheese with chicken fingers, I guess.

Adrian, who refuses to eat breakfast except on weekends, continues to get two Bento boxes of mostly raw food, and one container of lentils, to take to the office for lunch.

A sample bento box for Adrian. In this one I packed salted avocado, grapes, peanuts, raw-milk cheddar, apple, hummus, and Mary’s Gone Crackers Thins.

Every meal is a chance to heal.

Now, if a child’s system is damaged and not properly absorbing nutrients, all the raw vegetables in the world won’t necessarily get the healing done; the trick is to find the proper food combinations. We are awaiting new test results to learn more about Martin’s gut today and whether we need to tweak his diet yet again.

And we press onward.

Mystery Abundant

Posted on September 27, 2017 by findingmykid

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.

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

Posted on September 25, 2017 by findingmykid

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.

Actualización II de Nicaragua: NicarComidaYAgua

Posted on August 14, 2017 by findingmykid

Feeding Martin in Nicaragua is both more and less challenging than in the States.

To be sure, Nicaraguans love their packaged foods. Chips, crackers, cereals. Breads. Whatever forms of snacks.

They also love their fresh food. Fruits, vegetables. Fish and shrimp and octopi pulled from the ocean and eaten the same day. (I hate that Martin eats octopi.) By now we’ve been able to locate the stands and trucks with the produce we want. Samara has a favorite fish monger and a carnecería for occasional chicken. Virtually nothing is organic, except some newfangled greens and the occasional imported quinoa. I am comforted by the fact that the food is grown locally, where Nicaragua’s stricter stance (than the U.S.) on genetically modified crops also reduces the presence of especially worrisome contaminants like glyphosate.

Martin’s breakfast is usually grain-free pancakes (say, plantains and peanut butter), or fritters, or eggs with vegetables, plus fruit. Dinner is rice and beans, or coconut-crusted chicken nuggets with vegetables, or quinoa pilaf, or peanut-butter stir-fry, or maybe ceviche. (Samara’s ceviche skills are said to be outstanding.)

A Nicaraguan breakfast of plantain-and-peanut-butter fritters plus apple. Did you know apples can be grown in Central America? Neither did I.

Weekdays, Martin eats lunch at his camp. That development—eating with the other kids, and mostly what they eat—has been huge for Martin, who’s wanted all year to buy lunch at his school back home, which, of course, would be inconceivable: Have you seen U.S. school lunches? Here, at the camp, lunches are prepared fresh from organic ingredients, many grown on site, with focus on health. I met in advance with one of the camp directors and asked that they respect Martin’s dairy and beef allergies, and that he not be permitted to eat any gluten. No problem, they said. The directors reported that, for the first week, Martin had “lunch worries” and needed to be persuaded each day, anew, that in fact he would be fed. At first, he ate tentatively, mostly Nicaragua’s famous rice-and-beans dish, gallo pinto, or even arroz unadorned.

The aftermath of Martin’s octopus, rice, and vegetables on the beach.

After the tentative first steps, Martin started taking advantage of everything offered. I mean, everything!, and that’s brought some slip-ups. Even though I pack healthy snacks, he wants the snacks the camp keeps on hand for all kids, which include popcorn, commercial yucca and plantain chips (fried in who knows what sort of refined vegetable oil), French fries, popsicles with food colorings and refined sugar. I don’t like the snacks aspect but am resisting the urge to make the camp pull back; eating at camp, plus the wide availability of fresh seafood and vegetables in Nicaraguan restaurants (not much pizza or pasta getting in the way), seems to be helping to reduce Martin’s food-related anxiety. I hear less, “Can I eat this? Can I eat that?” and more, “Hey, do they have octopus? How about rice?”

We are, however, in something of a popsicle crisis. Now that Martin has tasted a frozen refined-sugar stick, my homemade frozen-fruit popsicles just aren’t cutting it anymore.

This is a “fancy” breakfast, like we have when guests are eating with us: pancakes and potatoes cooked with shredded vegetables.

The overall picture is that Martin has been eating 93.6% well, and 6.4% sugar and junk food. When I say sugar, I mean those aforementioned popsicles but also potatoes, rice (which also brings arsenic), and fruit. The fruit includes a daily smoothie from our favorite smoothie stand. Martin selects the three fruits he wants (usually pineapple, mango, and lemon), while from behind him I mouth “¡y aguacate!” to the smoothie-maker so that he’ll throw in some avocado, too. Martin professes not to like avocado, so I have to get creative, like sneaking it into a smoothie.

A few weeks ago, I discussed the situation with Martin’s doctor back home. Too much sugar, I confessed. A whole lot of fruit. Smoothies every day.

“You mean fresh, mineral-rich local fruit?” she asked.

“Some of it directly from the fields,” I replied.

“I think he’ll survive.”

Another breakfast, this time plantain-and-egg pancakes with pineapple and raw energy bars that I made from almonds, dates, limes, and shredded coconut.

ASD Recovery Recipe: Anything Pasta

Posted on March 21, 2017 by findingmykid

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.

FullSizeRender 8

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

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.

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

On Food and Genetics, and Judgment

Posted on January 28, 2017 by findingmykid

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:

Picky eating is a reason to pursue biomed and dietary changes, not a reason to discount them.
Genetics don’t always get to write a child’s future, at least not every aspect of the future.
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.

Eureka!

Posted on January 13, 2017 by findingmykid

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?

Posted on January 10, 2017 by findingmykid

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.

img_4007-2

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):

Octopus.
Calamari.
Fish.
Lollipops.
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?

More… Inclusive

Posted on December 4, 2016 by findingmykid

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.

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

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.

Finding My Kid

A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

Category Archives: Diet