Tag Archives: recovery

On Food and Genetics, and Judgment

Posted on by findingmykid
10

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.

I’m Ignoring Politics by Writing a Wistful Post Instead

Posted on by findingmykid
Reply

Last weekend we went skiing at Jiminy Peak with Martin’s friend Bobby, his neurotypical brother Adam, and their parents. Martin and Bobby took their ski lessons with Stride Adaptive Sports, a terrific organization similar to the National Ability Center, our Utah mainstay.

Monday morning (no school, for Dr. Martin Luther King, Jr. Day), I retrieved Martin after his lesson and chatted with the instructor.

“Your son is an absolute pleasure to work with,” the instructor said. “He’s so talkative. He could be a New York City tour guide!”

That cuts both ways. Martin is obsessed with trains and landmarks, and the location of both. “Mommy, the Chrysler Building is north of the Empire State Building. The Empire State Building is on the same road as the entrance to the Queens-Midtown tunnel. The bottom of Central Park is where Midtown becomes Uptown.”

I said, “Thank you. We’ve worked really hard on his speech and language.”

“Saturday, I had two lessons with boys who were basically non-verbal.” The instructor shook his head. “I just couldn’t break through to them.”

It’s hard to convey the tone the instructor used when he said he “couldn’t break though to them.” He wasn’t speaking scornfully, or with pity, or even with sadness. It was more like he was disappointed in himself, and wished the situation had been otherwise.

I started to say, “I understand.”

But I stopped myself.

Because I can’t understand. Not any of this mess.

Boom! Booh-Yah!

Posted on by findingmykid
7

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!

Posted on by findingmykid
9

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.

All That Could Be

Posted on by findingmykid
1

A former work colleague, now a friend, messaged me the piece on a Rhodes Scholar with autism. This friend has a brother with autism and a son with severe anxiety troubles, and she knows that Martin has autism. (She may or may not know that, really, Martin had autism.) About the Rhodes Scholar, she wrote simply: “Love this.”

I responded:

I love it, too. But I also don’t love it.

A story like this is terrific because it reminds people that ability does not depend upon behavioral factors, and that awkwardness or perseveration are often just covers for awesomeness! Also, it’s a powerful message to go out and achieve, without excuses.

On the other hand, celebratory and feel-good stories tend to normalize autism in a way that I find unproductive. This is what feeds the “neurodiversity” movement, the idea that neurological variations just happen, and we need to stop trying to “correct” neurodivergent behavior. It’s like, If you can be autistic and a Rhodes Scholar, why would you not want to be autistic?

I don’t support neurodiversity or the feel-good approach to autism. What’s also going on in this story is that a mother had to sacrifice her own career (in toto) and personal success in order to give her son this opportunity. And that this young man, an Oxford-bound college graduate, cannot live independently and perhaps never will. And that he needs a service dog to assist with interactions, and that it’s unclear whether he’ll achieve the depth of interpersonal relationships that lead to marriage and the sustenance of enduring friendships.

I guess that seems like a pretty bleak view. My view of persons on the autism spectrum is blindingly bright. They achieve so much despite struggling with issues that the neurotypical cannot, truly (I include myself), fathom. My view of autism itself, however, is negative. “Autism” is the symptoms of underlying health and immune disorders that can, and should, be treated. In terms of the young man profiled in this story, I would suppose that autism may have given him the (perseverative/obsessive) focus to acquire vast amounts of facts/knowledge. But that amazing brain of his would have been present and functional even without the autism—and perhaps he could have become an independent Rhodes Scholar who will miss his family and girlfriend and football buddies during his years in England. And perhaps his mother could be practicing medicine and available to help others, free from the monopoly of her son’s needs.

I am 100% sure this is more than you wanted to hear this morning! It’s a topic I feel so strongly about that sometimes I can’t help myself. The way I look at it is this: Autism was never an essential part of my son, and it’s not an essential part of anyone on the spectrum. It’s an imposed condition that can be alleviated or eradicated through the right biomedical treatment (though not always, not by a long shot). My son is witty and charming. He’s going to go to Princeton or maybe Yale, and he could well end up a Rhodesie, if he doesn’t decide the Marshall Scholarship or a Fulbright is a better fit. I’d prefer if he does all that without the burden of autism.

Does that make sense? Honestly, it’s hard for me to write about these things because I worry about offending others who are touched by autism, which as time goes by is more and more of us. I’ve got a “love the sinner, hate the sin” relationship with autism, albeit in foggier terms. I admire the person—and could do well enough without the autism.

I sent the message off with trepidation, almost chagrin. I like this friend. She’s never been anything but kind, and I feared insulting her. It is so tricky, to discuss recovery with an autism family member who’s not pursuing biomed. I would never want to suggest that anyone else is providing inadequately, or has to be doing biomed, or anything similar. We all do what we can.

I hope she responds well.

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

Posted on by findingmykid
6

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):

  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

Posted on by findingmykid
5

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:

fullsizerender-3

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:

img_5130

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.

 

img_5053

Alternative Medicine

Posted on by findingmykid
1

In the post “Mid-Air Without a Net,” I wrote:

The taekwondo teacher wants to talk to you, [Samara] texted Saturday morning. He’s wondering if Martin is taking any drugs for his ADD.

 Oh no! I texted back. (More on that in a later post.)

It’s “later post” time.

When I received that text from Samara, I panicked. Mostly because I was in the middle of panicking about everything else, but still. I thought the Master Rob might tell us not to return Martin to class until we drugged him. I followed up the text and spoke with Samara, and the situation got worse (at least, in my head): When Master Rob asked her if Martin is taking any drugs for his ADD, Samara had responded that we do “alternative medicine.”

That’s a phrase I never use. To begin, I don’t consider treating Martin’s underlying health issues to be “alternative medicine.” We have chosen against trying to manipulate neuro-processing with drugs. We are pursuing non-pharmaceutical options. We are working with new discoveries in treating immune dysfunction. We have been lucky enough to find cutting-edge therapies. We are targeting overall health. We are following the path that, for our son, has garnered the best results. But alternative medicine—no.

At its most benign, I think, “alternative medicine” suggests that we’re a hippie-dippy family trying to cure a spectrum disorder with yoga. (No disrespect to yoga. Yoga is great for mindfulness. It does not, however, do much for the gut biome or neuro-receptors.) “Alternative medicine,” to some, suggests that we are treating our child as a laboratory experiment, or harming him, or failing to accept “proven” treatments that could benefit him. At its worst, I (like other biomed parents) fear that proclaiming “alternative medicine” could invite intervention by well-meaning individuals who think they know better for my son.

I met with Master Rob the next week. I explained that we aren’t pursuing pharmaceutical options at this time because we are trying to heal some gut and other health issues that affect Martin’s attention, and that using drugs would interfere with gaging our progress. I went on to say that we aren’t categorically against drugs but that we want to take this path as far as we can first. Master Rob said that he understood, and that he had resisted pharmaceuticals for his own son, who has ADD, until sixth grade, when he thought the transition to middle school had made them necessary. He said also that he was curious about Martin’s regimen in order to give him as much help and support at taekwondo as possible.

Good enough for me.

More… Inclusive

Posted on by findingmykid
Reply

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.

img_4905

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

img_4903

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.

Mid-Air Without a Net

Posted on by findingmykid
9

The past two months have been a struggle. I’ve alluded in the school-themed posts: disruptive silliness in class, lack of social enjoyment/awareness, moodiness. Most worrisome, Martin came off the school bus one day sad. I mean, he seemed really just sad. When I asked for details, he said he was “getting tired” of running at school and of riding the bus. He asked me to pick him up at school the next day. Out of concern for him, I rearranged my schedule and picked him up at school the next day, so he wouldn’t have to take the bus.

Steady, Up, Steady, Up, Steady, Down, Down, Down

The sequence of decline had unfolded this way: Martin has Lyme disease, most prominently, bartonella. Last spring, for Lyme, Martin was on MC-Bar 2™ and a Des-Bio Borrelia-Babesia kit, along with Microbojen™ ACV (subsequently substituted by Tangarana), gymnema, serrapeptase, Boluoke®, and Nose & Lung. He was tolerating that well. In June, after the Des-Bio Borrelia-Babesia kit was done, Dr. C and I decided to increase the Lyme-fighting measures. We stopped MC-Bar 2™ but added cumanda, houttuynia, DesBio Virus Plus, and Clovanol, along with additional supports like Magnolia Stress Aid and Lith-Oro™. The summer was tough, because Martin wasn’t sleeping well, and he exhibited defiance.

One benefit of keeping this blog, for me, is access to real-time impressions of Martin’s conduct. I checked my July and August posts to remember how he was doing.

In August, we ramped the anti-Lyme measures even more. Martin went on the comparatively powerful A-Bart™. Powerful. Not pharmaceutical. In the first weeks on A-Bart, we were in Costa Rica, and Martin flourished. Thereafter, his behavior started to slide. He started school a solid “decent,” whence he slipped to “distracted” and then “discombobulated.” His behavioral lapses looked like die-off-related ROOS. He had bathroom emergencies, i.e., sudden need to pee. I had to cut off his access to Disney Junior; he was so concerned with watching Mickey Mouse Clubhouse that he melted down if the channel guide listed an episode he hadn’t memorized, and he perseverated constantly on the show. (He’s eight. Mickey’s Damn Clubhouse is aimed at pre-schoolers.)

“Are you kidding me—is he on train lines again?” Adrian asked, when Martin, Mickey-less, switched to perseverating instead on New York City subway lines. “That’s like behavior we haven’t seen since kindergarten.”

Oh but you remember that behavior now, do you?

Sorting It Out

I scheduled a call with Dr. C.

Before the call, I held a sort of pre-game with my friend Stacey, another biomed parent. It looks like die-off, I told her, and I’ve got to find a way to right the ship. When Martin was in self-contained special education, I could weather these seasonal dips—two steps forward, one flop onto your backside, that’s the whipsaw of recovery—because his school specialized in addressing behaviors: Martin’s a little off his game. Deal with it. But now he’s in general education, in our local public school. They don’t want to deal with behavioral setbacks. They’ll kick him out. (I fear.) And then where will we be? We’ve already held him back in second grade to make the transition to general education. I can’t return him to second-grade special education, and he will have missed too much of this year to be in third grade.

“So what’s your plan?” Stacey asked.

I think I’m going to tell Dr. C that we need to come off all the bartonella remedies, I said, at least until our December visit to her office.

Stacey said: “Let me ask you this: What if you take him off everything, and he does better? What will you do, leave him off his remedies?”

I think he will do better off his bartonella remedies. That’s why I want to do it, to halt the die-off. I wouldn’t eliminate the remedies forever, though. Bartonella is still an issue, as the die-off shows. No more remedies might return him to “baseline,” but there probably wouldn’t be more progress.

That was my pre-game: to explore taking Martin off bartonella fighters, temporarily.

Dr. C agreed die-off was at issue, and took Martin off A-Bart and CXVRM3-Micro, increased his support remedies like enula, and added pau d’arco to help with stress.

Martin’s bathroom emergencies stopped overnight. His behavior, on the other hand, held steady for a few days then declined further still. He became anxious. “Mommy, are you angry?” he asked, constantly. That’s something I say to him occasionally, when he’s not grasping my cues: “I am angry,” as in, “Martin, bunny-hopping down the hall an hour after bedtime is not funny. I am angry.” Now my occasional anger morphed into a boogeyman lurking behind every interaction. “Martin, stop playing iPad and come to dinner.” “Are you angry? Mommy, are you angry at me?” “Get back in bed, Martin.” “Mommy, did you get angry? Are you still angry?” “How was school, Martin?” “Are you angry, Mommy?” Meanwhile, the perseveration rocketed to that level where Martin is physically unable to stop speaking. When we attended a weekend play date with his former classmates from self-contained special education, Martin didn’t look like the kid who’d transitioned to general education. He looked like the least engaged kid of the bunch.

I scheduled another call with Dr. C, on a Wednesday evening.

Nadir

That Wednesday, we hit a low point. Martin, who loves (but doesn’t always read) books, was excited for the book fair at school. Two days earlier, I’d helped set up the book fair and seen plenty that would catch Martin’s eye: colorful softcovers, cartoon-character pencils, big erasers, silly pointers. On Wednesday morning, I sent a signed, blank check and, to facilitate my own accounting, I scrawled “for books” on the check’s description line.

Apparently, whoever helped Martin at the book fair interpreted the “for books” descriptor to mean Martin could select only books—no pencils, erasers, bookmarks, pointers, gadgets, or toys. So while Martin’s classmates gleefully (I’m picturing this in my head) attacked the goodies, Martin was limited to books. According to the teacher’s later description, this circumstance sent Martin, who was already having a bad day, into a tailspin from which he was not able to recover.

The school has my mobile phone number. Would that someone had called me to ask whether Martin could buy only books. Argh.

Martin was with his nanny, Samara, after school that day, because Adrian was in South America and I had to work. I arrived home at 5:50 pm, to accommodate a 6:00 pm call with Dr. C. As soon as I entered the house, Martin began to cry. “Why did you say I could only buy books?” he asked, tears rolling. “Why wasn’t it okay for me to buy toys?” I needed a minute to surmise what had happened, and then realized it must have been what I wrote on the check. I brought Martin to the sofa, cuddled him on my lap, apologized, assured him I hadn’t meant to say he could buy only books, promised him a weekend trip to the toy store. I consoled him as best I could, then had to leave him, still sniffling, with Samara while I took the call with Dr. C.

That moment, Wednesday, 6:00 pm, was rock bottom.

“I can hear the frustration in your voice,” Dr. C said as I described the past two weeks: the perseveration, the constant questions about whether I was angry, the emotional instability.

I know we have ups and downs, I told her. I know that with progress come setbacks. But he’s in general education now. We have no safety net.

Dr. C was reassuring. Bartonella manifests in anxiety and compulsive behaviors. The A-Bart had been too strong a remedy, and Martin couldn’t handle the die-off. But plainly he needs something to keep the bartonella in check.

We agreed to add Active H2 and pantethine to help Martin’s current state, and to put him back on the MC-Bar II and Des-Bio bartonella kit that he’d tolerated well in the spring.

I felt better, like at least we knew what was going on.

After the call with Dr. C, Martin’s behaviorist came over. Darlene, the behaviorist, sees Martin at school and at home, and we had arranged this meeting the week before. I told her about Martin’s book-fair meltdown, about how poorly everything had been going, about the bartonella treatment, about my worries that he the school could seek his removal.

Like Dr. C, Darlene was reassuring. “You need to know,” she said, “that Martin is not the behavior problem in his classroom. There are kids with more behavior issues, and whose parents aren’t interested in doing anything about it.”

“Really?” I asked

“Yes.”

“What I need to hear is that the teacher and the aide like Martin—that they still want him in the class, and support him being there.”

“The teacher loves Martin. And the aide thanked me for recommending her to work with Martin.”

With that, I felt better still, like at least we weren’t on the verge of being kicked out of school. Darlene reviewed a new playground participation plan she’d been working on. She also recommended that I write a note to Martin’s teacher letting her know about the bartonella flare, and that we were taking action on that front.

Typically, I shy from discussing anything we do biomedically with a mainstream audience, lest we appear radical or weird. On this occasion, however, I felt that an explanation could buy some extra patience for Martin. As soon as Darlene left and Martin was asleep, I sat at the kitchen table and handwrote a two-page note to Martin’s teacher.

Reemergence, Nope

Meanwhile, I had to order the new remedies that Dr. C and I had agreed upon, and I hoped they would arrive on Friday. They didn’t. In an unfortunate coincidence, I had a concert to attend Friday night, and Saturday morning I left before dawn to retrieve a classmate from JFK airport and attend a luncheon at my law school. Adrian was still in South America, on family business, so Martin spent Thursday evening (when I work), Friday evening, and most of Saturday with Samara, whose text messages described abysmal behavior.

The taekwondo teacher wants to talk to you, she texted Saturday morning. He’s wondering if Martin is taking any drugs for his ADD.

Oh no! I texted back. (More on that in a later post.)

Sunday, after church—“He told me all about the presidents, like wow! He knows all about the presidents,” the Sunday school teacher reported—I took Martin to the City for a play date. He wanted to spend the afternoon riding subway after subway. His playmate, who is also currently fixated on train lines, was more than happy to oblige, so we rode subways all afternoon. On the way home, Martin had a meltdown. I don’t even remember why. I just remember the meltdown.

Monday evening, the new finally remedies arrived. I started Martin on the Active H2 and pantethine immediately, and Wednesday morning I added MC-Bar II, beginning with only two drops and working up from there. Wednesday, something went right. Around lunchtime, I received this email from his teacher:

Just wanted to write a quick email to say that Martin is having the BEST DAY! He is working cooperatively with his classmates on a math enrichment, took initiative to organize who was going to bring out the recess equipment, followed a web quest on the computer without any help, and followed every other direction given today with little or no prompting! We are very proud of him and wanted to let you know.

Was it a miraculous transformation? I wish. Thursday and Friday Martin was foggy again, and our weekend included another trip to ride MTA subways to and fro, and another meltdown. In fact, several meltdowns.

Breathing Deeply

By now a month has passed since we implemented the changes (have you noticed I haven’t been posting much?), and I regret to report that the situation has improved only marginally. The week before Thanksgiving, we had a pre-scheduled meeting with Martin’s school team, to discuss how his transition to a general-education classroom has been going. The teacher reported that Martin is having meltdowns about three times a week, whereas in September he had none.

Nevertheless, no one suggested that Martin doesn’t belong in the general-education classroom. Those present, in addition to the classroom teacher, included the speech therapist, OT, PT, resource room teacher, and school psychologist. The table was quite full.

At home, our family is being held hostage by Martin’s obsession with NYC trains/landmarks combined with his emotional fragility. His is constantly demanding to see my calendar and know whether we have any trips to the City planned, and if so, he wants to dictate which trains we will take and where. He becomes agitated and upset if his wishes aren’t met. Over Thanksgiving break, I planned a trip for us and four visiting relatives to a Manhattan Bierhall, to appease Martin. The logistics involved Martin traveling by train with one of my brothers, while I drove with another brother’s suitcases, because he was returning home that day. Martin got to eat a treat meal with potatoes and sausages. His response to our efforts? He melted down because he wanted to “ride subways and do something else in the City.”

I’ve been bouncing Martin’s enula and MC-Bar II doses, experimenting to see whether one of those remedies could be causing adverse effects. No luck.

This week I spoke again with Dr. C. I feel like I’ve morphed from the confident patient into the needy parent. We are not sure whether bartonella is at fault, or whether another culprit could be at work, such as mold in his new school. (Recall that much of the spiral has occurred, and intensified, upon his beginning school.) Dr. C advised that I try zeolite and CBD oil to control the situation until Martin’s appointment next week in her California office.

Readers, this is a trying time.

Still, I do have a silver lining: Martin is sleeping well. Which means I am sleeping well. Which means I can handle almost anything.