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

Starting a Sea of Supplements

Drops of blood spurted out as I sliced my finger with the knife. Red drops dotted the bottom of the stainless steel sink and the bright orange carrot I’d been trying to cut in mid-air.

I sighed. How long is this going to take to clean up, I muttered. I tried wrapping my finger in a paper towel to stop the bleeding, but a puddle of red seeped through. I cursed; I was going to have to take the time to run upstairs, clean the cut and find a Band-Aid.

Logan’s favorite breakfast, pumpkin pancakes

It was already 5:35 a.m., and I still had to mix Logan’s pumpkin pancakes, cook them, and get the roast in the crock pot for supper that night. I still had to spoon his CocoYo yogurt into a thermos to bring as a snack. And, of course, I hadn’t packed a lunch for myself yet.

This was Monday morning. The rest of the week went much the same–without the finger slicing but with the addition of Logan and Sadie standing in the kitchen, wanting to play, from about 5:40 on. Both cases mean less time to put together lunch, breakfast, two snacks for Logan and a lunch for myself for the day.

But other than crazy mornings, we’ve been plugging along steadily with GAPS. We’ve gotten to add some delicious new foods, like fermented vegetables and pumpkin pancakes, which we told Logan are special Halloween pancakes. We’ve also started making our own coconut milk.

I barely stomach dry, boiled chicken anymore, but with boiled carrots and fermented red cabbage, it’s suddenly delicious.

The pancakes have lead to a little more wiggle room with breakfasts, though snacks are still pretty boring. We have two options: the CocoYo yogurt (that I’m not entirely sure is legal in this stage) and the Peppermint Gummies I wrote about last time.

Results are also back from Logan’s blood and urine analysis tests, and we met with his MAPS doctor to discuss any abnormalities. Little surprise, there are quite a few.

“His thiamine levels are low, and his B-vitamin levels are low, and he has a high need for glutathione.” The doctor dived right in. “His need for a few B-vitamins is a potential indication of some methylation needs.”

I’ve been reading about nutritional supplements, the methylation process and other biomedical treatments for autism for the past year — basically nonstop, in fact. I have piles of articles and studies I’ve printed out with highlights and summary notes, where I’ve translated the scientific jargon into my own words. I thought I understood it all fairly well. Yet, sitting in that insanely hot exam room, I felt like I was drowning in it all. Magnesium glycinate what? Orthomolecular intestinal huh?

11 supplements (some twice a day) ... is this too much of an overload?

11 supplements (some twice a day) … is this too much of an overload?

When it was all over, the doctor had given us recommendations to begin seven new supplements — on top of the four Logan already takes – and had ordered four additional tests. On my drive home, I couldn’t help but think about all the other articles I’d read, the ones on gullible parents spending a fortune on worthless “cures” for autism when of course everyone knows there isn’t one.

But isn’t there? I then think about Joanna, the woman I met from White Bear Lake, whose two sons are no longer on the spectrum due to dietary changes and supplements. And all the stories, like Quinn’s and Darren’s, from Talking About Curing Autism Now, that offer evidence some children do recover from autism from diet and therapy.

Even as I flip-flop between feeling gullible and progressive, Logan’s new pills now pile on our kitchen counter, and looking at them, I’m filled with either dread or hope, depending on my mood. We’ve separated them into a pill box to keep a week’s worth all organized. But still. Not only are they expensive – yet another recurring cost each month, this one about $200 – there’s just so many of them. I can’t fathom having to swallow that many pills every day for the rest of my life. Right now, Logan’s really excited about them – Jason’s been telling him the’re super pills. Will the novelty wear off once Logan realizes these are for the long haul?

At least the diet has an end date. We’re still lingering in Stage 3, but soon we’ll move into Stage 4. We simply have to. I admit I’m filled with dread more often than hope lately, and that part of me that wants to quit seems to grow bigger every day. This diet is hard. The supplements seem insurmountable. And my chest feels gripped by a tight fist that’s making it harder and harder to breath. Some days, I simply can’t tell if this a better alternative to junk food and meltdowns.

Feeling: Clueless

The one good thing from this week is we discovered Logan LOVES Halloween pancakes!

  • 6 eggs
  • 1 can of purred pumpkin
  • Dash of cinnamon

Blend ingredients (Jason uses a blender; I just use a fork). Grease skillet with coconut fat (we save the fat that solidifies when we make coconut milk to use). Drop small dollops of batter onto a hot skillet and cook — like regular pancakes, little air bubbles pop up in the center when they’re ready to be flipped.

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