MTHFR.

It stands for methylenetetrahydrofolate reductase – or mother f*cker.

It’s the gene that sets the body’s detoxification process in motion by creating a long chain of enzymes, proteins and hormones the body needs to get rid of toxins. I’ve written before about how many toxins everyone ingests through city water, new clothes, mattress, plastic food containers, body wash, laundry detergent, carpet, cleaning fluids, etc. The toxic load on everyone is greater than it was 1,000 years ago, and it’s contributes to health issues of everyone – especially people diagnosed with autism.

MTHFR.

Studies have found that patients diagnosed with autism have a mutation in the MTHFR gene, meaning from the start, the detoxification process doesn’t get going like it should. My friend Joana – whose two boys were diagnosed with autism – had her whole family tested for this genetic mutation and found that she and her boys had a faulty MTHFR. And actually, studies have found, too, that “parents share similar metabolic deficits in methylation capacity” with their children with autism, according to a study in the Journal of Autism and Developmental Disorders from 2008.

Another study by Dan Rossignol and Frye in Psychiatry from 2012 found that about one in three children with autism have mitochondrial dysfunction, and that dysfunction is correlated to autism severity. My husband and I saw Dr. Rossignol talk at the TACA Real Help Now Midwest Conference last weekend, and it was incredible how much information supports the link between gut problems and autism. Possibly the most impressive statistic I heard at the conference was that 74 percent of children with autism show improvement after helping the body’s detoxification process (reported by the Autism Research Institute).

“It’s beginning to look like autism is a medical problem rather than psychological,” Rossignol said at the conference. Of course, this line of thinking isn’t really just “beginning”—Rossignol showed a headline from an 1889 medical lecture titled “Insanity* Proceed[s] from the Colon” given by a Chicago doctor and professor—but rather is beginning to more accepted.

Cooling down a pumpkin “pie” Jason made

 

So we had Logan tested for the MTHFR mutation with a test called 23AndMe. Logan had to spit into a big tube. He cried and shouted about it and refused to cooperate; in the end, we ended up siphoning saliva out of his mouth with a syringe. It wasn’t the most painful thing we’ve done, considering, but it definitely made me want to swear. MTHFR. Hopefully, it’ll tell us something to make it worth it.

If he tests positive for a faulty MTHFR gene, that means his body is not drawing out toxins like it should. Which further supports our thinking I wrote about here, that we suspect Logan’s rash was stemming from canned foods—not the food itself, but the nickel in the can and all the chemicals cans are sprayed with before being filled. With a nickel allergy common in Jason’s family, there’s a good chance Logan is allergic to it, too—and if his body is unable to detoxify, that allergen simply sat there, keeping him sick.

But in the meantime, while we wait for results, I’m happy to report that Logan has been having great days at daycare; he even earned his orange belt at karate! We are 51 days into our GAPS journey and started Stage 4 this weekend. As always, I wasn’t really sure if it was time to transition or not—we haven’t seen much physical change. But we stayed in Stage 3 for about four weeks, and the lack of variety was killing me (though Logan was taking it like a champ).

Waiting to test for his orange belt

Waiting to test for his orange belt

I’ve been seeing benefits from eliminating sugar and taking a probiotic, too. I now wake up every morning at 4 a.m., not groggy and icky but energetic and eager to spend an extra hour writing. My toes, which have been gross and itchy since I was in high school, have also started to get better.

“It’s really crazy how it all comes down to diet,” said Dr. Anju Usman at the TACA conference. “The #1 thing you can do for your child is clean up their diet.”

 

P.S. As I type this, an email pops up that Logan’s test results were inconclusive due to small sample size; we’ll need to get him to spit again and resubmit. MTHF*R.

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My Definition of Hero

A quick thought tonight as Logan falls asleep next to me in the big bed … to send love and support to all parents of children diagnosed with autism. This morning I met a friend for coffee, and it’s clear her stepson’s recent diagnosis is taking a toll on her.

Normally a cheery, optimistic person who tended to respond with, “Oh, we have challenges, but he’s fine …,” today her whole body seemed different. Her replies were more terse as she told me about the issues at at school — her stepson is 12 — that have her about at the end of her rope. Compounding the problems seem to be the boy’s father, who doesn’t–or won’t relate–to his (biological) son. So it’s fallen on her to figure out how to help Josh* understand that shut-off switch many of our kids don’t have; while the other kids he follows understand when too much goofing around is too much, Josh cannot gauge this and continues to push, push, push. Daily it’s been landing him in the principal’s office and once even resulted in pending legal charges for destroying property.

“And the thing that’s hard is that the school only has one special ed room,” she sighed. “So when he acts out, he’s put in that room with the nonverbal kids. It doesn’t do a thing for him — it just makes him angrier.”

Coincidentally, a few hours later I ran into a former student. She’d actually dropped out of my class, but I still feel a soft spot for her because I know she has an autistic teenager at home. As if it’s not hard enough to be a working mom, this woman is a working mom to a special needs child (and his autism is fairly severe) while trying to get a college degree and improve her lot in life. But every time she thinks she’s making progress toward her goal, life intervenes. This term it happened to be that her son exposed himself at school and was actually taken to jail and surrounded by people who had no idea he had autism, and likely no idea what that meant, either. I hugged her, praying to God nothing like this ever happens to Logan.

I can’t imagine the turmoil these women face, especially as Logan has better and better days at daycare and school. My heart goes out to them, and to all the brave women fighting for their children. They define the word “hero” to me.

autism love

*Not his real name

The Mysteries of Allergies

The web of small red bumps draped around the left side of Logan’s mouth is stubbornly staying put. It emerged more than a month ago, and ever since, we’ve been trying to pinpoint its mysterious cause.

“We better cut out dairy,” we’d said.

That initially seemed to help. The bumps faded and seemed to be healing—but they never disappeared completely, and then returned, just as strong.

“It could be impetigo,” his doctor had said. “You better start Bacitraicin.”

That, too, initially seemed to help. But just like before, the red bumps started to diminish but then came right back.

Or maybe they never faded at all—by now, it’s been so long, I’m struggling to remember. Did I only think the bumps were fading because I was hoping they would, because I was sure they would?

Cranberry gummies

Cranberry gummies

What new foods had he eaten?  Jason and I struggled to list them. By now, we were in Stage 3 of GAPS and had introduced the Halloween pancakes I wrote about here. “But he’s had pumpkin before,” I frowned. “And I can’t remember anymore if the rash started before we added pumpkin or not–I think it was before.”

Even more frustrating is the fact that following the GAPS protocol is supposed to help isolate these things – the diet calls for adding new foods one at a time and waiting to see if there is a reaction before moving on. And that’s what we were doing—and still, here we are, with a mysterious rash we couldn’t puzzle out.

“Could it be honey?” Jason asked.

But no, I was positive the rash had started before we’d started allowing small bites of honey.

“Then we’re back to the pumpkin,” I sighed. 

“Or the can the pumpkin comes in—“ Jason said, and as he did, I heard echoes of our nephews.

My son gets a rash around his mouth from tapping the eraser-end of a pencil on his face, Jason’s sister had once told me. It’s the nickel in the pencil’s metal.

My dad could never wear a belt, she’d also said. The metal buckle would give him a rash.

“I think you’re right,” I told Jason.

We immediately stopped making his favorite pumpkin pancakes, which broke my heart. Basically his one gastronomic pleasure was gone once again. But Logan actually took it in stride, as long as he could have sunny-side eggs—NOT poached in broth like he’d had to have in Stage 2—instead.

We’ll try pumpkin pancakes again, I promised my sad boy. We’ll buy some fresh pumpkin this week.

Of course, this threw my pattern suddenly far of course. Pumpkin pancakes weren’t the easiest thing to make, but I’d gotten it down. Now that I was using fresh squash instead of canned pumpkin, my pancakes were pathetic. Instead of smooth, cohesive batter that could be poured into small drops in the pan, mine plopped disjointed off the ladle, landing in clumps that refused to stick together. Flipping them was impossible.

Failed pumpkin pancakes

Failed pumpkin pancakes

Jason suggested I microwave the squash first and mash it in the food processor. He even did it for me once, and this batch turned out acceptable though the batter was extremely runny and the pancakes were paper-thin.

When I tried this method, the batter was horribly runny—so much like water it’d be impossible to make anything from it. I thought I’d be clever and add a bit of hazelnut flour to get them to stick together, since we’d decided to move to Stage 4, where nut flours are acceptable, but that made things worse. Now instead of spilling out all across the pan, the batter turned crumbly and fell apart at the slightest touch from the spatula. Again it was impossible to flip; they cooked instead in a pile ad turned into breaded squash pudding instead of fluffy pancakes.

God, I hate cooking. I really, really do.

Then suddenly, his rash worsened. But he hadn’t had pumpkin pancakes in a few days!

The basil in the pesto I made? The olive oil, also new? The cranberry gummies?

Or the can the coconut milk for the cranberry gummies came in?

This version of our gummy treats had a great tart taste.

“He hasn’t really ever had canned food before,” Jason said slowly. “Except for a time or two—maybe it’s the accumulation of suddenly having it every day, from the pumpkin or the coconut milk.”

Two things support this could be true. One, a study from the Journal of American Medical Association found that BPA levels in people who ate one serving of canned food every day for a week increased 1,221 percent because almost all canned goods are sprayed with this chemical. And two, canned goods contain nickel, and when we ingest it, it accumulates in the body. It builds and builds in the body until the body begins to react.

Without canned goods, Logan’s rash is definitely fading this time. This weekend I found organic, puréed pumpkin in a box and decided to try it instead of the maddening fresh version. I also wanted to see if the rash returned in full (mystery solved: a reaction to pumpkin) or not (mystery solved: canned goods). Logan was thrilled to get pumpkin again, and together, we made pumpkin cookies.

A few hours later, he threw up.

“He could be just sick,” Jason pointed out.

What are the odds he’d get sick at the same time as battling an allergic reaction? Instead of solving the mystery, I only deepened it.

Feeling: Baffled

No-Bake Pumpkin Cookies*

  • 1/3 cup coconut oil
  • 1/3 cup honey (or less)
  • 1/3 cup almond butter
  • 1/4 cup pumpkin
  • 1 1/2 tsp pumpkin pie spices
  • 2 cups unsweetened, shredded coconut

Mix everything except the shredded coconut in a big glass bowl and microwave for 20 seconds to meld the flavors. Stir in coconut. Spoon small dollops onto a cookie sheet or plates and refrigerate for two hours.

*I love these, and Logan initially liked them, too–but since he was sick, he won’t touch them.

 

Yup, Still The Worst Cook in Cybersapce

If ever I get too confident that I’m actually learning how to cook an feel comfortable in the kitchen, a day like today comes along to remind me I will likely always be an epic failure.

I bought a Spiral Slicer; a funky device that slices zucchinis into long, thin strands that look just like noodles. Since we’ve finally moved to Stage 4 of GAPS and can now have cold-pressed oils, I thought I’d make a recipe for pesto sauce that I found from the Home Health Happiness blog and something akin to pasta for the first time in God knows how long (because before the past 42 days on GAPS, we were following the Body Ecology diet, which also outlaws carbs). Zucchini Noodle Pesto – I was beside myself.

Zucchini noodles

Zucchini noodles

Normally, I’d never try a learn new, fancy dish like this during the week, and certainly never in the evening when we’re all just getting home. With Sadie tugging on my arm to play dolls with her, Logan incessantly asking me to play video games with him, the dog jumping up and down for me to walk her, and my husband eagerly chattering about something (today it was election results), it’s impossible for me to focus. I’d describe it like trying to learn Greek while walking on a tightrope over a shark tank.

But I’d taken today off work to catch up on writing (I decided to do NaNoWriMo this year and of course am already 6,000 words behind), clean, and grocery shop, so I had the sort of calm, capable feeling that comes after a day of accomplishments (I’d written almost 7,000 words, bought groceries and did the dishes!). I knew I could do this.

I picked up the spiral slicer and fumbled with it in my hands. “How does this thing work?” I asked Jason.

“Well, you use this piece to stab the end of the zucchini, and then you twist it through this piece.”

It felt foreign and awkward in my hand, even more so when I stabbed the zucchini and tried to twist it. Thin, dark green slices fell into my glass bowl.

“Oh,” I said, stopping. “Am I supposed to peel these first?”

I decided I should. That made the slices look like noodles, but I still couldn’t get them to slice into long strands. The tool just felt wrong, completely unlike a pen, which feels comforting in my hands — in fact, I even hold one while delivering a class lecture just to feel at ease. Maybe I should try holding one while I cook, too.

I sliced through most of my two pounds of zucchini, then decided I’d probably done enough. Jason was, thankfully, manning the food processor—another kitchen tool that never failed to baffle me- for the pesto sauce.

“Do we just drop all the basil in, or do we have to trim the ends first?”

“Is that all the garlic we have? I don’t think that’ll be enough.”

“The recipe calls for what? ‘A quart of oil olive, or as much as will fit’? What the hell is that?”

In the end, we did trim the basil stems, we had no choice but to only use six cloves of garlic (the recipe called for 2-10, which seems like an incredibly big range), and we only added maybe a cup of olive oil. All the ingredients swirled around with the high-pitched whine of the food processors, transforming into a bright green paste.

I dipped my finger in. It tasted lovely, like satin and velevet.

My zucchini noodles, on the other hand, were not faring so well. We didn’t really have a recipe for how to make them, but Jason guessed that, based on another recipe in Against All Grain, they’d need maybe five to eight minutes in boiling water. I did that, but when I drained them through the wire colander, they instantly turned to mush.

"Noodles"

“Noodles” Note how they were supposed to look in the picture behind.

I plopped the gob of zucchini into a glass bowl and sighed. It looked like pale green pudding – far, far from anything resembling noodles.

But—maybe because I’d spent all day writing, maybe because Logan’s had two rock star days in a row, maybe because Sadie was at the moment happily distracted—I was not deterred. I simply mixed in a few spoonfuls of pesto sauce and retrieved the now-cooked chicken from the stock Jason had been making. I spread the sauce over it and declared the meal a victory anyway.

The kids even ate it, though Logan had to be coaxed to do so. In fact, he had to be coaxed to eat everything, including his chicken, cabbage and carrots. Despite my satisfied attitude while cooking, I soon fell apart.

“Logan! EAT!” I cried as the night wore on and Logan babbled baby talk, pushed his fork through the air and pressed it to his face, then traced the faint circles around and around on his plate.. “Please take one bite!”

“No, Sadie, do not get up from this table again. If you do, you’re going in your bed. It’s not play time.”

“Logan, EAT.”

Logan stimmed all through the meal, taking bites only after three or four prompts from me. He screamed when I set the timer, telling him he had to clean his plate before it went off or he wouldn’t get a treat before bed. This tactic had worked a few months ago for awhile, but lately, it’s seemed to be more stressful on him than motivating. But on nights like these, it seems to be the only thing that works to get him to eat.

IMG_0079

Instead of eating, Logan is spending most of supper tracing the circles on his plate.

It worked tonight, too, but his distracted/defiant/restless mood continued. He simply could not sit still while I read books to the kids, and a stream of baby talk and extreme silliness seemed to just bubble out of him. He reminded me of a pot of boiling water with the cover rattling on top, barely able to contain the steam struggling to escape.

“Logan, if you can’t have a quiet body, we’ll be done with books and go to bed,” I warned him. I warned him several times, in fact—then finally, I had to follow through with it. “That’s it!” I cried. “You’re not having a quiet body. Get in your bed. Now!”

“I WILL have a quiet body!” he cried. “I WILL!”

“Logan, you’ve said that for the past six times. You will have a quiet body tomorrow. But right now, there have to be consequences!”

He screamed and cried and kicked, his body thrashing all over his mattress. I felt awful, but I felt like I was exploding, too. Why can’t he contain his energy? No matter if he’s angry or excited, he’s always like that boiling water pot, bursting with hot emotions.

“What is going on with him?” I asked Jason when the kids finally fell asleep an hour later.

“Did you see his ears?” he replied. “Fire red.”

Feeling: Irritated

The Five-Skittle Setback

“How was Halloween? Your kids in sugar overload?” asked a coworker on Monday.

I chuckled a little. “Sort of,” I said. “Logan had five Skittles this year.”

My coworker’s eyes went wide. “Five Skittles? That’s it? How’d you manage that?”

What is this food in a box?

What is this food in a box?

I’m always at a loss for what to say when I have to explain our diet. Especially when I’m pretty sure I’ve explained it to this guy before. “Well … those five Skittles are the only sugar he’s had in an entire year.” As I said it, I realized it was true and was also struck by the incredibility of it: Last Halloween was the last time Logan had any candy or anything sweet. “Even fruit, for the most part,” I added.

On one hand, I’m feeling pretty proud of surviving Halloween with only those five Skittles and happy Logan was able to have a bit of a treat. On the other hand, I feel awful I allowed those five Skittles and worry about their effects. (At least it made for a good example of a paradox for my poetry students today.)

And there were effects. I was being truthful when I told my coworker the five Skittles had caused sugar overload. The following day Logan was crabby and defiant, after a rock star week. This morning, too, he seemed to be trying to push buttons, initially refusing to take his supplements and then refusing to walk into the garage and climb into the van to go to daycare. But at least I have an explanation for this recent behavioral setback.

Amazing what five Skittles can do!

And despite the Skittle skirmish, I think we’re seeing good progress. Logan’s IEP meeting was yesterday afternoon, and his teachers and therapists agreed that speech and occupational therapies are no longer needed. In fact, it sounds like Logan is one of the most talkative and brightest kids in his preschool class! Of course, social skills are still lacking and will remain goals on the IEP, but everyone at the meeting felt confident Logan will be ready for a mainstream kindergarten class next year.

As always, the question is, did the diet–GAPS or BED–cause all this progress? Is it the probiotics, the supplements, the vitamins? Or would we be in this exact place even without having gone through (and continuing to go through) this journey? As Jason and I talked last night, he indicated he doesn’t know if he buys it. It’s a hell of a lot of work, he said, for something we’re not able to prove.

And as usual, he’s right–technically. We can’t prove any progress can be attributed to diet. But the Skittles, and the correspondence to a sharp mood swing, suggest a link to me. Those five bursts of color and sugar might have caused a minor setback, but they also helped support my decision to stick with GAPS, as tough as it is.

And it’s getting easier! On Halloween, armed with honey-roasted walnuts, flourless pumpkin muffins and peppermint gummies for Logan, we hit a friend’s Halloween party with the kids. But it turned out our preparations wouldn’t have even been necessary–I can’t tell you how stoked I was when we learned the couple throwing the party follows the Paleo diet. There were actually a few things at the party Logan could eat! (Many thanks to Angi and Fred!)

Here’s to everyone eating healthier these days!

Feeling: Sugar Rushed

Honey-roasted walnut "candy"

Honey-roasted walnut “candy”

Honey Walnut “Candy”

We made these for Logan as an alternative to all the junk food he got trick-or-treating, and he loved them (thank God)!

  • ¼ cup honey (or less)
  • ½ teaspoon pumpkin pie spice
  • 1 Tbsp ghee
  • 2 cups raw walnuts
  1. Melt together honey, ghee and spices
  2. Spread walnuts over wax paper in a cake pan, and drizzle melted honey mixture over them
  3. Toss until coated
  4. We simply put the pan in the oven and left it on as low as it would go (250 degrees F), for a couple hours.

Easy!

 

 

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