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The Rabbit Hole
How it started:
I am homeschooling my 7 year old daughter, A, this year. I do not want to homeschool her forever - I have concerns about her socialiszation. But her behavior at school last year in the first grade grew to be atrocious and counter to learning anything.
She was sent to the office almost every day for running away from her teacher and hiding in the art cabinets or alternatively chasing and grabbing at her teacher (if the teacher took something from her.) There weren't any clear triggering events, but a oftentimes it would be that there was an assignment shift, the teacher would tell her to put away the old work and focus on the lesson or some new work, and then it would set my daughter off. We had her evaluated with a neuropsychologist and have a formal diagnosis of ADHD, for which the accommodations are to give her less work or more time to do some work. This didn't really help.
Close to the end of the year, the principle, vice principle, teacher, school psychologist, and like five other people had a meeting with us where they discussed A's behavior. My husband and I were seriously worried they were going to expel her or at the very least hold her back a year. (She had been suspended twice from school already.) Instead, after going down the litany of behaviors that was causing disruption to her learning, they just looked at my husband and I and asked us what they should do. It was a shocking moment to me - these were the experts! Had they never seen a kid like ours before? If they had told us, "You need to do x at home, get her evaluated for this other behavioral disorder" etc, we'd have done it! We're demonstrably involved middle class parents who can afford to take her to therapy every other week and see whatever doctors are needed.
I'm focusing on A's behavior at school largely because that was what caused us to pull her out of school. Her behavior at home has also been laughably bad. I've had moments where I considered she might just be what was once called an Imbecile. For example, a little while ago we went for a family walk. She ran into the side of a car backing out of its driveway. She was running ahead of us against our wishes, as normal, and we saw the car backing out so we yelled at her to stop. So of course she ran faster and... Bonk! No injuries fortunately. Stupidest car crash ever.
The thing I need to get across is that A is the sweetest child ever when she's not upset. She is upset at her own behavior and is often praying and wishing she wasn't such a "Bad Kid." She asks to do more chores, she looks out for her younger siblings, she minds her Ps and Qs. But once or twice a day, she will get into a "stuck" mode where she will keep trying to do the same insane thing over and over again and needs to be carried to her closet (full of stuffed animals, we don't even bother putting clothes in there, it's a safe soft place.)
Anyways, we pulled her out of school and I've been hanging around Homeschooling forums. I perk up whenever I see a topic around ADHD, because that at least is one diagnosis she officially has. A couple weeks ago, I saw someone mention that their kid has something called "PDA" and that they have to accommodate that in their homeschooling methods. For the first time in my life, I saw someone else describe a child who acts like A.
What is PDA?
First a disclaimer. PDA seems to be recognized as an expression of Autism in the UK, but it doesn't seem to be recognized anywhere else. I do not wish to make a stand one way or another on if it exists. All I know, is that my kid acts the same as the other kids who are said to have it (and she doesn't really act like any other kid otherwise.)
PDA stands for Pathological Demand Avoidance. The theory is that, when someone with this disorder has a demand placed on them (explicit or implicit) they perceive it as a threat and over time it actually activates their fight/flight/freeze response. This actually explains my daughter's behavior so well it's entirely shocking to me. I've seen her shaking in fear as she struggles to put shoes on her feet for five minutes because I told her, "hurry up, we're going to be late." I already suspected anxiety was involved, but she doesn't act like someone with generalized anxiety. This is the first thing that really makes sense.
What did I do?
First, I looked up supplements to calm a kid down. If most of her misbehavior is caused by improperly triggering her fear response, lets turn the dial down on that. I found L-Theanine and thought it looked interesting. Lots of people who take it say they don't notice anything - it's not a relaxant or a downer. But other people who take it say it makes them more resilient to downward spirals, which is what I'm looking for. It's pretty safe - you can take grams of it without ill effect. Doesn't build up in the system either.
It immediately changed her behavior. When the supplement arrived she was in the middle of a bit of mania, talking about selling crafts nonstop all day and making enough money to buy a diamond (we read A Little Princess recently.) I wasn't able to get her to do anything - eat, practice math or reading, go outside, anything else. She was staying up well past her bedtime. I gave her about 50mg in her water and in thirty minutes she was happy (different from mania, trust me), cuddly, and soon, sleepy.
Since then, I've been giving her some in her water at bedtime and she's only had one of her "stuck" episodes once. On days where I have an outing planned, I give her some in the morning as well and.. it's incredible. Makes me want to cry. We have good days. I can take her places without her running into the road. I can tell her it's time to go back and she doesn't fall to pieces. She acts polite and conscientious and everything that I know her to be. It has been years since I could take her anywhere without having to accept that it will involve a tantrum or two.
The only downside is, when I give her a morning dose, she often reports a headache a few hours later (as it's wearing off?). No big deal, she has had headaches before. I give her ibuprofen and she is fine.
But it doesn't sit right with me
As magical as this all is, it's not like it's in her genes. A Western European did not evolve the need for an extract from an Asian plant in order to avoid running off the nearest cliff.
And the headache bothers me. What if I'm depleting something in her body to give her these good days now, but it will come back to bite us later?
So I kept looking. Most PDA parents talk about changing their entire lifestyle to "accommodate" their PDA kid - just never demand anything from them and set up their lives so that no one else ever demands anything from them. I think this is ridiculous. It's basically consigning the kid to being institutionalized later on. No one can grow into an adult this way. But when A is overloaded with demands, she's not learning either.
I kept looking for keywords surrounding diet and supplements. Finally, I saw someone state, "We resolved pda entirely with a nutrient based approach" and brought up William Walsh. Walsh is a quack without a background in medicine who has diagnosed many ill-behaved children with "Pyroluria" and cured them with large doses of Zinc and vitamin B6. And like, it does actually seem to cure them in the course of a few weeks. Walsh has his own reasons for why he thinks these supplements cure "Pyroluria" and they all seem to be medically wrong. But if it works, it works?
Enter the MTHFR
Googling Walsh's name around, I stumbled upon a Reddit community of people troubleshooting their Vitamin B problems with genetic tests and high doses of supplements. They all have a genetic mutation that makes their bodies less able to process the folate in food into the active form, L-5-MTHF. If they have more folate in their system than they can process, they have a build up of homocystine that causes lots of other bodily functions to gum up. They also aren't making enough L-5-MTHF, which prevents other bodily functions from doing what they should.
There seems to be a correlation between MTHFR mutations and ADHD, Autism, and other disorders.
There are other genetic mutations that can cause issues with B vitamins and the Reddit community is constantly over/undershooting and making themselves over-methylated and under-methylated and it seems very messy. They don't just supplement L-5-MTHF, they also need to reduce folate (which is in most cereals and breads in the United States), supplement B2, B6, B12, zinc, and magnesium, pay attention to if they're supplementing the methylated vs unmethylated versions of these vitamins, and try to keep things in balance.
Those who achieve this balance claim they have found a nirvana free of skin issues, pains, and mental issues that have followed them from childhood. Those who mess up end up with copper deficiency and bouts of schizophrenia.
I have found a Psychiatrist in my state with an actual MD who claims to treat "Nutrient Imbalances, Including Methylation Imbalances" as well as "Abnormalities in Stress Hormone Pathways and Other Hormone Related Root Causes." She is not in my insurance network so it would all be out of pocket but a consultation with her would be within my budget. But I only found her after three layers of quack-searching. This is the medical equivalent of vibe-coding and I realize that.
Is this worth pursuing? Has anyone else fallen down the MTHFR rabbithole?
Firstly, and probably the most important thing to say: I'm sorry. Both for you, and your daughter. That is a shitty situation to find yourself in.
I will preface this by saying that I'm not a child psychiatrist. I'm not any kind of psychiatrist at all, given that I'm still in early training. Caveat emptor, or perhaps caveat curator and you are best served by contacting one with the full set of credentials.
Were it that simple. The process by which humans impart their genes to their offspring, and by which genes then assemble a whole human being from very rudimentary code, is amazing, yet imperfect.
Even if you, and your husband's genes are immaculate, de novo mutations sneak in all the time. Or there might be recessive traits in hiding, which have evaded generations of selection against them only to strike seemingly out of the blue. In other words, bad things can happen to good people, or at least their blameless children. And then there's environmental factors.
Nobody evolved to need expensive chemotherapy medication for their aggressive childhood leukemia, but alas, it happens nonetheless. That line of thinking isn't productive, the question is what works.
In my case: Two of my grandparents, my father, and even my mother, were all top of their class in med school, and have the awards to prove it. Didn't stop my brother and I from having ADHD, and benefiting heavily from medication to help. My mother might have mild ADHD, but it's usually less bad in women, and it didn't really ruin her life.
(The genetics of ADHD are complicated, and not worth getting into right now. What's done is done, and your daughter's diagnosis fits the bill.)
Anecdotal evidence: I have ADHD. I drink green tea to curb the negative effects of my ADHD medication. I think it helps, a lot, but I've never taken refined l-theanine supplements. My optimism regarding l-theanine took a significant hit recently, but the more important question is:
Does it work? If the answer is yes, then don't change it. It's the opposite to that joke, where you tell the doctor that it hurts if you poke yourself somewhere, and they tell you not to do it.
Medicine is not nearly so deterministic, nor the human body not so, that we can predict in advance if certain substances will reliably cause/not cause certain effects. At most, we can give probabilistic answers.
If you think l-theanine helps.. Well, it's a safe chemical to ingest, even for children. It's not doing any harm, and is safer than most prescription anxiolytics. I would absolutely not prescribe her benzos, and I'd be scared to consider SSRIs.
The headaches are concerning though, and you're right to worry. While L-theanine is generally very safe, any substance that consistently causes side effects in a 7-year-old deserves scrutiny. It's possible she's getting rebound anxiety as it wears off, or there could be something else going on.
Now, the MTHFR rabbit hole. Oh boy. Here's what we know: MTHFR mutations are real and fairly common (about 40% of people have at least one copy). They do reduce the efficiency of folate metabolism. And yes, there does seem to be some correlation with ADHD and autism spectrum conditions, though the effect sizes are generally small and the mechanisms unclear.
But the Reddit methylation community you found... that's where things get genuinely scary. These people are essentially conducting chemistry experiments on themselves with minimal supervision, often at doses far above what you'd get from food or standard supplements. Some claim miraculous results, others end up with severe side effects. It's the supplement world's version of DIY hormone replacement therapy.
On PDA: You're right that it's not recognized in the US, and there are good reasons for skepticism. I've never encountered it even in the UK, but once again, I'm just a first year psychiatry resident, and there are many things I haven't encountered. The diagnostic criteria are frustratingly vague ("pathological demand avoidance" could describe half the children I know), and the proposed interventions often sound suspiciously like "never ask your child to do anything they don't want to do," which seems like it would create more problems than it solves. But - and this is important - sometimes unofficial diagnostic categories capture something real that the official ones miss. Before ADHD was widely recognized, plenty of kids were getting labeled as "lazy" or "defiant" when they had a genuine neurological difference. The fact that PDA isn't in the DSM doesn't mean the cluster of behaviors you're describing isn't real or treatable.
So what should you do?
First, the good news: you've found something (L-theanine) that helps your daughter function better, and you're being appropriately cautious about side effects. That's already more than many parents in your situation have managed.
For the longer term, I think the psychiatrist you found is worth consulting, despite the quack-adjacent discovery process. If she has an actual MD and hospital privileges, she's at least operating within some bounds of medical accountability. The worst case is you're out some consultation fees and get told your daughter is fine; the best case is you find someone who can help navigate this mess with proper medical supervision. Before going down the genetic testing route, though, consider getting basic nutritional bloodwork done - B12, folate, iron, vitamin D, maybe homocysteine if you're really curious about methylation. If there are obvious deficiencies, addressing those is straightforward and doesn't require diving into the methylation rabbit hole.
I'm personally tempted to consider stimulants, which I believe are appropriate even at that age group, given severe ADHD. Alas, I lack the confidence to make that recommendation, and my usual recourse, asking my bosses, doesn't work very well when it's on behalf of internet strangers.
Go see a child psychiatrist, preferably one with a penchant for learning or behavioral disorders. Maybe see two. Or three. Do what they say, and don't listen to anything I have to say beyond this very point.
I wish you, and her, all the best. ADHD sucks.
Thank you for your detailed and thoughtful reply!
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