☀️ Kenzo
This chapter is mostly science stuff, so I'm letting Daddy explain. But basically? He found out that maybe my brain wasn't getting enough of a vitamin it needs — AND that my cells might not be making energy the way they're supposed to. And there might be ways to help with both! Update: my folate antibody test came back, and it turned out Daddy was onto something.
How the search began
💗 Mama
After two years of therapy, I remember the night Jay came to me with his laptop and said, "I think I've been looking at this wrong." He'd been on PubMed for hours. He showed me a statistic that stopped us both cold — that a large share of children with ASD test positive for something called Folate Receptor Alpha Autoantibodies. And most parents have never heard of it.
He also found a second thread: something called mitochondrial dysfunction — problems with how cells produce energy — appearing in a significant subset of children with ASD. And a test called the Organic Acids Test that could give us a window into both. I remember thinking: why hasn't anyone told us about this?
💙 Daddy
I'd been doing late-night PubMed deep dives for months, following the research of Dr. Richard Frye and Dr. Vincent Ramaekers on Cerebral Folate Deficiency. The more I read, the more pieces seemed to fit Kenzo's profile — ASD, suspected childhood apraxia of speech, slow speech gains despite consistent therapy, and a GFCFSF diet we'd started for other reasons. I started to think we weren't just dealing with one puzzle. We were dealing with two overlapping ones.
Discovery #1: Cerebral Folate Deficiency & FRAA
💙 Daddy
What is Cerebral Folate Deficiency?
CFD is a condition where the brain doesn't receive enough folate (vitamin B9), even when blood folate levels appear normal. Folate is essential for brain development, neurotransmitter production, and DNA synthesis. When the brain is deprived, it can affect speech, motor skills, social interaction, and cognition.
The most common cause in children with ASD is Folate Receptor Alpha Autoantibodies (FRAAs) — antibodies that interfere with the receptors responsible for moving folate across the blood-brain barrier.
~70%
Research by Dr. Richard Frye and colleagues found that a large majority of children with ASD — on the order of 70% across studies — test positive for at least one type of FRAA, making it one of the more common and potentially treatable biomedical findings in autism. Yet most parents have never heard of it.
💙 Daddy
The two types of FRAAs
- Blocking antibodies — directly prevent folate from binding to the receptor
- Binding antibodies — attach to the receptor at a different site and are associated with immune-mediated effects over time
A child may have one or both. This distinction turned out to matter for us — so I'll come back to it once I share Kenzo's actual results below.
The FRAA test — how we got tested
For about 12 months, I searched for a local organization in the Philippines that could help us. Then Kenzo's school brought in Dr. Raymond Escalona from CreateHealth, who shared their local experience with FRAA testing and folinic acid treatment — and everything clicked.
The test is done by Gensens Diagnostics in the Philippines, who has a partnership with ReligenDX in the US. It's a blood draw done locally, shipped to the US for analysis. Results took about 2–3 months.
✅ Kenzo's FRAA results are in
Kenzo's Folate Receptor Antibody Test (FRAT) came back positive. Here's exactly what it showed:
| Antibody type | Result |
|---|---|
| Blocking | Negative |
| Binding | Positive |
In plain terms: Kenzo tested positive for the binding antibody and negative for the blocking antibody. That means he is FRAA-positive — one of the two recognized antibody types was found.
💙 Daddy
I'll be honest about what I felt reading this: a strange mix of relief and weight. Relief because it wasn't nothing — there was a real, measurable finding that fit the years of small clues. Weight because it meant a path forward that we'd now have to walk carefully, with his doctors.
Here's why the binding result matters and isn't a "lesser" positive. When researchers first described CFD, the blocking antibody got most of the early attention. But more recent work has put the binding antibody in the spotlight: a 2024 study by Dr. Frye and colleagues found that, among children with ASD, those with higher binding-antibody levels actually showed a greater response to leucovorin (folinic acid) treatment. In other words, the binding antibody isn't just a marker that something's off — current research treats it as one of the better signals for predicting who may benefit from treatment. You can read that study on our Research page.
I also want to be straight about what a positive test is and isn't. It is not a diagnosis on its own — this antibody also shows up in some children (and adults) who don't have autism, so a positive result is consistent with a folate problem without proving it's the cause of Kenzo's challenges. And it's a snapshot, not a permanent number: the lab's own report notes that antibody levels are known to fluctuate over time — and in response to cow's milk intake — and that repeating the test may be recommended. So Kenzo's blocking antibody being "not detectable" today doesn't rule it out forever, and his binding level could shift. We'll be guided by his doctors on if and when to retest.
💗 Mama
For two years I'd been collecting worries with no name to put on them. Seeing "POSITIVE" on a lab report was hard — but it was also the first time the worry had a shape. It wasn't a diagnosis of something hopeless. It was a door. And after so long of feeling like we were guessing, having something concrete to bring to Kenzo's doctors felt like finally being handed a map.
💙 Daddy
Treatment: leucovorin (folinic acid)
For a child who is FRAA-positive, the primary treatment discussed in the research is high-dose leucovorin calcium (folinic acid). Unlike regular folic acid, leucovorin can reach the brain through an alternative transport pathway (the reduced folate carrier), routing around the receptor that the antibodies interfere with. This is a prescription treatment that must be prescribed and monitored by a physician — which is exactly the conversation Kenzo's results now let us have with his team.
💬 Where the evidence stands (and an important distinction)
I want to be honest about the wider picture, because it's been changing. Folinic acid for autism is an area of active, still-unsettled science. As of 2026, the largest leucovorin-for-autism trial was retracted, and the U.S. FDA approved leucovorin only for the rare genetic form of cerebral folate deficiency (FOLR1) — not for autism in general. Major medical groups (like the American Academy of Pediatrics and the Child Neurology Society) don't recommend it routinely for autism outside documented cerebral folate deficiency, though they support individual, doctor-guided decisions. "Not FDA-approved for autism" doesn't mean "banned" — doctors can and do prescribe it case by case. Larger, better-designed trials are expected during 2026. We walk through all of this in plainer detail on our Research page. For us, it means treating folinic acid as a careful experiment with Kenzo's doctors: a clear reason to try, clear things to watch for, and an honest look at whether it actually helps.
And on the practical side: leucovorin, folic acid, and methylfolate are all forms of folate but they work differently. Leucovorin specifically routes around the folate receptor that FRAAs interfere with. A positive FRAA result is information for your doctor — not a prescription. Your doctor needs to guide treatment; please don't self-prescribe.
💙 Daddy
Why dairy-free matters here
This connects directly to Kenzo's result. Research suggests that proteins in cow's milk (casein) can cross-react with the folate receptor, and the lab report itself notes that antibody levels can change with cow's milk intake. This is one scientific reason behind the GFCFSF diet (gluten-free, casein-free, soy-free) that's commonly recommended alongside leucovorin treatment — the idea being to reduce a potential trigger for the antibodies. For us, seeing "responds to cow's milk intake" written on Kenzo's own report made the dairy-free effort feel a lot less abstract.
Discovery #2: Mitochondrial Dysfunction
💗 Mama
The mitochondria finding was the second thing that changed our thinking. I'll be honest — when Jay first explained this to me, I thought: cells? Energy? What does that have to do with autism? But the more I read, the more it made sense. Kenzo had always fatigued faster than other kids. His recovery from illness was slower. He'd hit walls in therapy sessions that felt like more than just difficulty — they felt like running out of fuel.
💙 Daddy
What is mitochondrial dysfunction?
Mitochondria are the energy-producing organelles inside every cell in the body. When they don't work well, cells — including brain cells — don't get the energy they need to function optimally. This can affect brain development, therapy responsiveness, cognition, motor skills, and even gut health.
A landmark 2012 meta-analysis by Rossignol and Frye found that mitochondrial dysfunction is present in a significant subset of children with ASD — far higher rates than in the general population. And importantly, in most cases, it's not a genetic mitochondrial disease — it's a secondary dysfunction that may be addressable.
How mitochondrial dysfunction can overlap with CFD
Here's what made this especially relevant for Kenzo: mitochondrial dysfunction can, in theory, worsen Cerebral Folate Deficiency. The active transport of folate across the blood-brain barrier requires cellular energy (ATP). If the mitochondria aren't producing enough energy, folate transport could become even more impaired — compounding the problem. The two conditions can potentially amplify each other, which is why I wanted to look at both rather than just one.
What can be done
When mitochondrial dysfunction is identified, support may include coenzyme Q10 (ubiquinol), L-carnitine, B vitamins, and riboflavin. This should be guided by a functional medicine or metabolic specialist who reviews the test results — and, just as importantly, who confirms there's actually a problem to treat before adding anything. It's not a one-size-fits-all protocol, and the evidence here is still early — a recent supplement trial was small and maker-supplied — so it's another place to go carefully rather than assume more is better.
Discovery #3: The Organic Acids Test (OAT)
☀️ Kenzo
The OAT was a special pee test! It's a lot easier than a blood test — I just had to give a urine sample. Daddy says it told them a lot about what's happening inside my cells. Science is wild!
💙 Daddy
What is the Organic Acids Test?
The Organic Acids Test (OAT) is a comprehensive urine-based metabolic panel that measures over 70 markers. It gives a detailed snapshot of how the body's cells are functioning — including how well the mitochondria are producing energy, how the body is metabolizing nutrients, and whether there are signs of yeast or bacterial overgrowth, oxidative stress, or neurotransmitter imbalances.
For children with ASD, the OAT can highlight functional patterns that don't show up on standard blood tests. It's worth being clear about what it is, though: it's a screening tool, not a diagnosis. Many of its markers are sensitive to diet, recent intake, hydration, and the timing of the sample, and independent reviewers have noted its diagnostic accuracy in autism isn't well-established — so it's best read by a clinician alongside symptoms and other tests, not acted on marker-by-marker on its own.
What the OAT can show
- Mitochondrial function markers — Krebs (citric acid) cycle metabolites, pyruvate, lactate, succinate, and others that hint at how efficiently cells are producing energy
- Oxidative stress markers — signs that cells may be under excessive oxidative load
- Nutritional markers — including B vitamins (B6, B12, folate), CoQ10, and carnitine
- Neurotransmitter metabolism — markers related to dopamine, serotonin, and other brain chemicals
- Gut health — yeast or bacterial overgrowth (such as Clostridia or Candida) that some research links to behavior
How we accessed it in the Philippines
The OAT is offered by Gensens Diagnostics and can be accessed through functional medicine practitioners in the Philippines. Like the FRAA test, the sample is collected locally and sent to a US lab for analysis. Our functional medicine pediatrician guided us through the process and interpreted the results.
💗 Mama
What I appreciated about the OAT was how much it could help explain — but Jay was careful to remind me it's a screen, not a verdict. Seeing data gave us direction and good questions to bring to our doctor, rather than a finished answer. For a parent who'd been grasping for answers for years, even good questions felt like progress.
What this means for Kenzo
💙 Daddy
So here's where we actually stand, now that results are coming in. On the folate side, the picture is no longer just a hypothesis: Kenzo's FRAA test is positive (binding antibody). That confirms there's a real folate-receptor antibody present — the very thing that can drive Cerebral Folate Deficiency — and, encouragingly, the binding antibody is the type recent research links most closely to benefiting from leucovorin.
The mitochondrial side we're still working through carefully with his doctors, and I don't want to get ahead of the data there — a finding only matters if the tests actually show it, and that's a conversation for his specialists rather than a conclusion I'll jump to here.
I want to hold two things at once, honestly. The biology here is real: cerebral folate deficiency is a genuine condition, these antibodies are more common in autistic children than in others, and Kenzo's positive result is a real, treatment-relevant finding. And the broader science is still being settled — the evidence shifted in 2026 (a major trial retracted, the FDA approving leucovorin only for the rare genetic form, big medical groups holding back on routine use). Both of those are true, and I don't think one cancels the other. What it means in practice is that a positive test isn't a magic answer and isn't a diagnosis on its own — but it turns "I have a theory" into "here is a measurable finding," and that's what lets Kenzo's doctors decide, with us, whether to try leucovorin as a careful, monitored experiment: a clear reason to start, clear things to watch, a set period of time, and an honest look at whether it actually helped. If it does help, the hope is simple: that easing a folate barrier lets all the therapy he's already working so hard at land more fully.
This chapter is still being written. We'll keep updating it honestly — the good news and the caveats both — as we learn more.