I’m traveling home from three-and-a-half days at Autism One, the annual conference on all things recovery. This marked my fourth year in attendance at A1.
I go to A1 to learn about the latest treatments and studies, to check out vendors whose products might benefit Martin, to socialize, and to benefit from other parents’ experience. In those regards, I get a lot from A1. Every year I come home reenergized, and with new ideas and persepectives.
The downside of A1 is an overwhelming experience that also leaves me distrustful of many practitioners. Every doctor (or scientist, or therapist, or homeopath, or naturalist, or spiritual healer, or garden-variety snake-oil salesman) brings along a testimonial in the flesh, some family profoundly helped, or even fully recovered, by that one treatment that only this practitioner offers. Dr. Jeff Bradstreet and his team push the Bravo yogurt product with GcMAF to restore the immune system; Dr. Zach Bush and his team swear by Restore liquid, which will provide the nutrients missing from today’s food supply and which, by the way, should not be used alongside Bravo yogurt. Entrepreneurs display stickers and pendants for EMR protection, while authors lecture on why stickers and pendants can’t protect from EMR. One guy was at last year’s conference pushing acupressure devices and magic salt that he claimed “many doctors, at least two dozen” in attendance already were using. (When I pressed, he wasn’t able to name any of the many doctors.) That same guy was back this year, with the acupressure devices and magic salt, and now also with some sort of machine for shaking people. Shake those toxins right out! I could hardly keep myself from laughing when I passed his booth.
My strategy for maximizing A1 is to make note of treatments and therapies that sound most applicable to Martin, ask other parents what they know, and then take no action other than creating a list to discuss, at our next appointment, with our MAPS doctor. I include “take no action” because it is very, very tempting to leave A1 and immediately make appointments with every doctor (or scientist, or therapist, or homeopath, or naturalist, or spiritual healer) that I’ve just seen. A1 embodies hope, which floats through the conference and lands on me: That doctor’s research into mitochondrial processing disorder is so thorough, so cutting-edge. If I just take Martin to that doctor’s office in Arkansas, I’m sure we could finally solve his mito issues. And that other doctor’s clinical trials with subcranial laser therapy show so much promise. If I just take Martin to that doctor’s office in Atlanta, I’m sure we could bring his receptive language up to his expressive. And those homeopaths in Minneapolis are making their own remedies. And that chiropractor in Chicago can improve attention through posture. And that naturopath in Connecticut has a more sensitive test for allergens.
You get the idea. Our MAPS doctor is educated, up-to-date, and less bandwagon-y than I am. She can help me sort it all through.
So here I sit (on an airplane, again) reviewing through my notes to write this list, which I will email Martin’s doctor before our appointment next month. This list might give you an idea of what we’re yet to try, and why I think it might help:
Martin’s diet remains more or less the GAPS diet, modified with sprouted quinoa, sprouted buckwheat groats, and on summer weekends when we’re grilling, occasional organic potatoes or sweet potatoes. Now I’m thinking more about salicylates, which in plants occur as natural compounds to ward off bugs and disease. Symptoms of salicylate sensitivity include meltdowns, red ears, bladder incontinence, and distractibility. I’ve never paid any attention to salicylate levels in Martin’s diet. Maybe his red ears, clustered meltdowns, ongoing struggles with bedwetting, and trouble attending mean I should start paying attention.
Dr. Raphael Kellman presented on the importance of expanded-panel blood testing for thyroid regulation. I know that our environment today is rife with endocrine disruptors, and that Martin, many moons ago when we did more mainstream “Track One” testing, exhibited low T3 hormone. What caught my attention in Dr. Kellman’s lecture was his emphasis on the thyroid’s role in regulating mitochondrial activity, and his opinion that addressing hypothyroidism in conjunction with mitochondrial disfunction produces synergistic effects. That being said, I spoke with at least one doctor who opposes treating hypothyroidism (i.e., with drugs) instead of using non-pharmaceutical gut biome restoration to lead naturally to hormone rebalancing.
The aforementioned Restore liquid.
Dr. Zach Bush talked about the loss of soil biome and resulting nutrient void in our contemporary food chain. He discussed how this makes children vulnerable to tight-junction injury (at a time when tight-junction toxins are on the rise). Then he made the case for Restore, which apparently is based on the carbon “snowflakes” from older, unadulterated soil and can help restore the tight-junction connections. Sounds good. On the other hand, I find myself suspicious when a doctor gives a convincing lecture on what’s missing from everyone’s diet, and how its absence affects immune-compromised children, and then the remedy for that deficiency turns out to be a product that this very doctor developed and sells. Ah, c’est la vie. I suppose everyone has to earn a living.
The aforementioned Bravo yogurt.
Bravo yogurt seems to be in some way created, or at least championed—what do I know?—by Dr. Bradstreet and his colleagues, including Dr. Marco Ruggiero. Dr. Bradstreet, over two lectures, presented something he calls the “Bradstreet-ESSENCE Protocol,” which seems to be shorthand for an individualized approach to treating ASD and, in that regard, not so different from what many MAPS practitioners already do. (ESSENCE stands for Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Exams and is the brainchild of Dr. Christopher Gillberg.) A key component of this Bradstreet-ESSENCE protocol is the consumption of Bravo yogurt with GcMAF. I think Dr. Bradstreet has some interest in Bravo yogurt, so see my comments above regarding Restore. I think maybe Dr. Ruggiero has some interest, as well, and Bravo also figures into what he calls his “Swiss Protocol” for treating ASD. Howsoever those interests come down, last year, when GcMAF was available in injectable form, I was interested, with trepidation. Yogurt seems more palatable. Is that a pun?
Writer Peter Greenlaw, who also presented at A1, on his book The TDOS Syndrome, attributes today’s obesity crisis to lack of nutrients in our food, noting for example that spinach today has something like 1/92 the iron of spinach from 50 years ago; we get all the calories with less of what actually fills and nourishes us. That sounded exactly like what Dr. Bush was saying, except instead of pitching Restore, Lawton advocated the Bravo yogurt. Lawton seemed to be good friends with Dr. Marco Ruggiero, who is Dr. Bradstreet’s collaborator. I wanted a map of who works with whom and who shills for what, like those handy charts of which conglomerate owns what food companies.
Dr. Bradstreet pushes magnetic resonance therapy, hard. I took an interest in MRT last year, when he, along with Dr. Ruggiero and others, presented the results of a pilot study that seemed almost too good to be true. I remain interested still, but it needs extra-careful consideration based on the cost, which is $1,000 for a trial to determine whether Martin is a “responder” and $12,000 for a full course, plus the expense of traveling to and spending weeks near one of two Brain Treatment Centers where the therapy is performed. In addition, Martin has a 12-month IEP and placement in an outstanding private school. If we were to take him from school for 12 weeks for a full course of MRT, we would jeopardize his spot in that class.
The creator of this product gave a technical presentation centered on hydroscopic, or as he called it, “proper” copper versus hydrophobic copper, and copper’s ability to donate or accept electrons as needed, a key factor in molecular electron nutrition. (He moved fast, and I didn’t understand all of what he said.) I’ve had Martin on MitoSpectra for more than a year and have been wondering whether it’s time for a change. I saw the Mitosynergy product last year but felt that it was too new to the market to try. Maybe now?
Wider allergy testing.
This doesn’t relate to a specific protocol, and my interest didn’t arise through any particular lecture or discussion. A lot of what I heard at A1 regarding autism phenotypes, and getting recovery to “stick,” got me wondering whether I really have an adequate handle on dietary and environmental allergens that might affect Martin. Years ago, we worked through a food desensitization course with a naturopath. We didn’t do IgG food-intolerance testing. Is it time?
We see Martin’s MAPS doctor, in California, in four weeks. Anyone want to guess how much of this list will remain after I talk to her?
Autism One side-note: Whoever schedules the lectures at A1 somehow knows precisely what will interest me, and packs those lectures together. As a result, some hours I’m picking from among four talks that I’m dying to hear, trying to convince friends to go into the three I don’t and then share their notes with me, and some hours I’m listening to a presentation on language software for children with Down Syndrome because I don’t have anything else to do. Shoot me an email if you need to know anything about language software for children with Down Syndrome.
Awesome post as always! I believe they posted most of the lectures online on their website, so if you missed something you can go to their website and view the videos: http://www.autismone.org/2015conferencevideos
Thanks! Here’s my thing, though: I never go back and watch! Somehow, from home, I just don’t manage to find the time. That’s why I value traveling to A1 so much. I have nothing to do but go and pay attention. 😉
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