Year 2014 in Review

A year ago, I woke up on New Year’s morning with the conviction that 2014 would be a banner year in Martin’s recovery.

It’s time for a look back at 2014.

Martin and a boy he played with on the beach, Florida Keys, New Year's 2014.

Martin and a boy he played with on the beach, Florida Keys, New Year’s 2014.

We started several interventions to which, for a change, Martin plainly seemed to respond. (I write “for a change” because these were some of the few times when I was able to isolate particular interventions that helped. More often, it’s just something in “the whole package.”) When I posted in late July about five treatments that were “working now,” I also posted my frustration in jumping to conclusions based on initial positive results. I’m going to report now that at least two of those five “what’s working now” treatments, six months later, still are kicking autism’s butt: camel milk and Candex. Martin’s language took off immediately following the introduction of camel milk, and it hasn’t stopped since. Did you Tuesday’s post about the conversationalist? How cool was that? As for the Candex, Martin still has yeast flares. (I’ve come to accept that candida overgrowth may be a battle we fight for many years. Therein may lie our war.) Since we started using Candex, however, those flares have been milder and of shorter duration. They’ve been manageable.

Martin with his cousin Mandy in the snow, February 2014.

Martin with his cousin Mandy in the snow, February 2014.

And the other three “working now” treatments, the GAPS diet, Enhansa™, and MitoSpectra? We are still on all three. I modified the GAPS diet by adding quinoa and reducing Martin’s meat consumption to one meal per day. (The reduction of meat isn’t particularly a “modification,” I suppose, though it felt that way.) I think Martin’s gut health is better than ever, though I wish he weren’t still prone to yeast flares. As to Enhansa, Martin’s chronic inflammation appears to have eased; I can’t say whether the Enhansa is responsible, or general improvement in gut health. I may stop the Enhansa, as an experiment, and see what happens. I plan to keep the MitoSpectra, for the time being. I reduced Martin’s dosage when a blood test revealed high levels of carnatine, and I feel like I could be doing more for his mitochondrial functioning (hence the quinoa). I’m keeping the MitoSpectra because I haven’t yet discovered that next best thing.

Martin at Planting Fields Arboretum State Historic Park, Oyster Bay, New York, Spring 2014.

Martin at Planting Fields Arboretum State Historic Park, Oyster Bay, New York, Spring 2014.

In the second half of the year, after my “What’s Working Now” post, we started vision(-ish) therapy with Dr. Deborah Zelinsky; Heilkunst homeopathy with Rudi Verspoor; and a weekly facilitated social group with local kids. So far, I give all three a big thumbs up. We are in another period when “things are going well” but I’m not totally sure why. I may be observing a slight uptick in Martin’s eye contact and attention span. I’ll give that development to Dr. Zelinsky. Martin had a fever and apparent healing reaction over the Christmas break. That goes to the Heilkunst. As for the social group, that’s a confidence-builder. Martin is happy to have friends of his own. Last week, for the first time, he asked to bring a game that everyone could play—the lovely wildlife bingo set his uncle Eddie gave him.

Martin rock climbing at a birthday party, July 2014.

Martin rock climbing at a birthday party, July 2014.

Did I make mistakes in 2014? Of course I did. I think the straight-up GAPS diet had too few carbs to meet Martin’s mitochondrial needs. I know there is debate on this point. For my child, I should have known; way back in 2011, when we first went grain-free, Martin showed signs of mild ketoacidosis, and we had to add a few gluten-free grains back in. This time around, I should have guessed that he would need more carbs than GAPS allows.

Martin with his uncle Rudy, Strasbourg, France, August 2014.

Martin with his uncle Rudy, Strasbourg, France, August 2014.

I rushed treatments. The mother who launched our biomedical journey cautioned me against the urge to do everything at once. Nevertheless, when I find an intervention that excites me, I might move too quickly. Even today, four years into Martin’s recovery, I’m prone to that amateur mistake. Other times, I just fail to pay attention and mistakenly start two treatments together. C’est la vie.

Martin looking over St. Bartholomá church, on the Königsee, Berchtesgadan, Germany, August 2014.

Martin looking over St. Bartholomá church, on the Königsee, Berchtesgadan, Germany, August 2014.

Despite my tendency to rush, though, I think honestly I can peg 2014 as the year when I internalized “marathon not sprint.” Sure, for years now I’ve parroted the mantra. Autism recovery is a marathon, not a sprint. Autism recovery is a marathon, not a sprint. But what kind of marathon did I really envision? In my “banner year” post, last January, I wrote, “I now understand ‘the long haul,’” and “I no longer fear that some mythical window will close while Martin is five . . ., or seven, or any age.” Even after I wrote that, however, the notions took some time to sink in. It wasn’t until November, when I wrote the “Journey” post, that I finally abandoned the idea that this process will have an end date. Striving for better health may well be a perennial task, one that Martin needs to continue even after he becomes responsible for his own care. Autism recovery is not a sprint. It isn’t even a marathon. Autism recovery is a lifestyle.

Martin hiking in the Adirondack mountains, near the Great Sacandaga Lake, August 2014.

Martin hiking in the Adirondack mountains, near the Great Sacandaga Lake, August 2014.

Behavior-wise, in 2014 Martin took new interest in socializing with other kids. Although he still isolates himself when he becomes overwhelmed, for the most part he wants to be near his friends, even if just to play side-by-side on iPads. Late in the year, Martin also (finally) made progress on nighttime potty training. He wakes now when he needs the potty, and yells for me. “Thanks, kid.” Language-wise, in 2014—well, wow. Martin has been asking “why” questions (like, gazillions of why questions) for a long time now; in 2014, he started answering them, coherently. He’s become conversational, staying on point for multiple exchanges. He can talk on the phone. This afternoon he’s going to call Uncle Eddie and wish him happy birthday! And the perseveration has decreased. Did I mention that the perseveration has decreased? Yeah, the perseveration has decreased. Such a relief.

Martin, on the left, with his cousin Luke, in the Florida Keys, New Year's 2015.

Martin, on the left, with his cousin Luke, in the Florida Keys, New Year’s 2015.

I am pleased to conclude that 2014 was a banner year in Martin’s recovery. All signs point to significant improvement in health, and corresponding changes in behavior.

May it be one banner year among many.

 

What’s Working Now

Are you familiar with miracle products?

I participate in various social media groups for parents with recovering children. Often, I see posts like this:

“We just started this [miracle enzyme, supplement, probiotic, oil, &c.] ten days ago, and I can’t believe the progress! My son is making consistent eye contact, he’s increased his vocabulary, and he finally potty trained! Today I got a note from his preschool teacher saying he is more ‘with it’ and making cognitive leaps. I’m kicking myself that we didn’t try this before now. Anyone having similar results?”

And then, comments like these:

Commenter 1: “Yes, yes, yes! [Miracle product] moved my son from babbling to words!”

Commenter 2: “We added [secondary product] to [miracle product], and the gains were even greater. We’ve been on them both for a month and will be continuing.”

Commenter 3: “This is all amazing! Where can I buy [miracle product]?”

Commenter 4: “[Miracle product] got my daughter into Princeton!”

Posts, and comments, touting a miracle product frustrate me.

Miracle-product proclamations frustrate me because autism varies from kid to kid. The health and immune challenges underlying autistic symptoms include, and exceed, neuroinflammation and other chronic swelling, mitochondrial disorder, genetic mutations, leaky gut, yeast overgrowth, oxidative stress, excess propionic acid. Autism exhibits disparate effects on cerebral function in girls versus boys. “Autism” is not a single malady and is never identical. That miracle product? Shoot a paint ball into a crowd. You’re bound to hit someone and splatter a few others. The rest will probably be left wondering what the fuss is.

I can understand that, if you’re thinking about trying a new product, you may want to post an inquiry about others’ experiences with the product. But given that the underlying disorders are child-specific, and that recovery means finding the right combination of many factors over time, why tout miracles? We parents of children with autism, we tread on hope. We’re easily led. When ten marvels in a row fail to help our kid, we end up embittered and broke.

Recovery from autoimmune disorder is a long, tedious slog without shortcuts. Sure, some families recover their children within a year, those lucky dogs. Most take much longer. Many children never get significantly better. The only miracle in autism is that, given our increasingly toxic world, we’re able to fight the spectrum at all. The amazing supplement, probiotic, or whatever, might indeed have given your kid the week of his life. That’s not a wonder. If you must tout a miracle product, don’t do it after a week, or a month. At least wait a year, then let us know if the developments continued, and speak in measured, child-specific terms.

Dear readers, are you wondering why I’m ranting? That was all an introduction to today’s post, which in comparison to its introduction, may seem brief. The topic is what interventions are working, right now, in combination, for my one kid, with his own particular combination of health challenges.

Following “Hard to Blog an Avalanche,” I received several inquiries about what I think has instigated Martin’s recent growth. Usually, when Martin improves and I’m asked why, I answer, “Don’t know. Obviously, something in the millions of things we’re doing is helping.” This year, I have a better inkling. I have seen five interventions correlate, almost certainly, with better health and/or increased speech:

1. Camel milk. Martin started drinking it this spring, and his language took off. Why? Too long for this post. Check back in a day or so to read “What’s the Deal with Camel Milk?”

2. The GAPS diet. I’ve written a lot about GAPS recently, and I’m also working on a post about how I don’t buy into everything that Dr. Campbell-McBride says. For now, it suffices to say that Martin’s digestion has improved.

3. Candex. We have battled yeast overgrowth, in one form or another, repeatedly since we began this journey. Going off just about every form of sugar helped, but only for a while. Nystatin did nothing positive. Earlier this year, poor Martin’s yeast was so bad that he clawed his skin raw. Finally, his biomed doctor said to try Candex, an enzymatic product. The same night he started Candex, Martin had a foul-smelling BM—yeast, I think, leaving his system. The next day, the skin rash began to clear. Since then, the candida has been under control, so much so that I’ve been able to add a little more fruit into Martin’s diet without worrying about the fructose feeding yeast.

4. Enhansa. Lee Silsby Compounding Pharmacy makes Enhansa, or curcumin, a derivative of turmeric. Martin suffers from chronic inflammation, which places undue pressure on his compromised immune system. Turmeric’s anti-inflammatory properties seem to be relieving that inflammation, even to the point that his face has lost its “puffy” appearance. (The puffiness was visible only to me and others to whom I pointed it out in photographs. Still, it was there, and a symptom of his systemic inflammation.)

5. MitoSpectra. This is a proprietary mitochondrial supplement blend of vitamin C (as ascorbic acid), vitamin E (as d-alpha tocopherol succinate), vitamin B5 (panthothenic acid), L-carnitine, and coenzyme Q10. We have used each of the component supplements before, alone and in combination, and indeed Martin still adds separate sources of vitamin C and L-carnatine. MitoSpectra, however, seems to combine the five supplements in a form and proportions that do well for him: He shows more coordination and energy, and less “floppiness.” At times I wonder whether those improvements are dependent on continued use of MitoSpectra; my hope is that, as his immune system overall continues to heal, his own mitochondria will be able to assume the work MitoSpectra is now doing.

Camel milk, GAPS, Candex, Curcuma, and MitoSpectra. Not a miracle, not any one of them.

Each a step in this tortuous recovery path.

Just maybe a longer stride than I’m used to.

Increased energy, coordination, and willingness to try new things. I'm so into these changes.

Increased energy, coordination, and willingness to try new things. I’m so into these changes.