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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?
In your position, I would pursue it. You can gather information without doing anything. You can take the babiest of steps as you want to. It can be really weird what works with kids.
Does your kid react to all demands in the same way? If I told my kid she had to put on sneakers before we could go to the park, she would lose her mind. But if I said we could go to the park but "the rules" said we needed to put on sneakers, that was different. She also loved racing, so we would both put on sneakers and see who could do it the fastest. Or race against a timer.
This sounds like a real tough situation. FWIW, ADHD meds worked wonders for my kid and in retrospect I wish I had gotten her started on them sooner. I waited til middle school, figuring scaffolding her environment and plenty of physical activity were working. They weren't. Her self esteem took a beating.
For the demand thing, it's not like the first time I tell her to do something causes a melt down. If it was that clear-cut, it would probably be easier to figure out. I can tell her to put on her shoes 10 days in a row and on the 11th day she panics, keeps taking off and putting her socks on, runs away, something weird.
And it can be asking her to do something she wants to do. There are lots of times where I plan something nice for her, something she's familiar with and knows she likes, and then when the time comes to do it she starts to act scared without being able to articulate why. "Something bad is going to happen." No, why would you think that!
Now that I have PDA in mind, it has been helping to understand some things. In Bluey, there is an episode where there's a "Magic Stuffed Animal" who makes the Dad do whatever the kids say. Kind of like Simon Says. My 6 year old and my 7 year old started playing that game together. My 7 year old was really into it for a few minutes, and then suddenly reacted violently to the stuffed animal. Before it would have been exhibit #100 of what a weird child she is. Now I'm like, "Maybe A shouldn't play that game."
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