My almost 5 year old son Bhodie has regressive ‘Autism, level 3’ marked by loss of speech, OCD behaviors, repetitive movement, sensory seeking behaviors and extreme anxiety and agitation with changes in routine and environment. He also exhibits stimming behaviors like hand flapping and sensory seeking behaviors like seeking water, smearing things, and seeking heights. His sleep is fractured. He has delayed receptive language and processing skills, grinds his teeth, and has a very limited diet. He experiences reactive hypoglycemia when not given frequent snacks, which includes symptoms of irritability and other behavioral and brain symptoms indicative of a neuroglycopenic or adrenergic response to the low blood sugar. He experienced a loss of previously acquired speech at 14-16 months old following bouts of illness and mold exposure.
Experiences and Diagnoses
Over the years we have been given multiple diagnoses including: mold illness, celiac, candida overgrowth, PANS/PANDAS, ARFID, PICA, SIBO, Autism, ADHD, histamine sensitivity/MCAS, GERD, and OCD.
Before some of the more severe symptoms emerged, he had difficulty feeding and swallowing even soft foods. He would gag, spit up and even dry heave well in to toddlerhood. We also noticed his year of illness followed by what seemingly was no reaction to illness, non-fevering.
Family History
We have a family history of MS, Parkinson’s, Autism, Autoimmune conditions, Bipolar, Depression, PMDD and PPP. As his mother, I have migraines, dyslexia, mysterious MCAS/ Histamine sensitivity, hormone issues like PMDD, light and heat sensitivity, eye floaters, sore muscles and joints, swollen ankles and fingers, and extreme fatigue at times. My grandmother had Parkinson’s, my uncle has MS, my sister has migraines, and my mother has bipolar disorder.
Symptoms Linked to Thiamine
What could have been my key markers and what brought me to B1/thiamine deficiency the first time were maternal migraines and dyslexia, pins and needles in hands or feet, frequent nausea, knee and joint pain along with muscle weakness and fatigue coupled with my child’s irritable nature, diarrhea, heat intolerance, food selectivity (less than 10 foods), insomnia, foot drop, and unwillingness to use his hands. I will say that it is very challenging to decipher the symptoms of a nonverbal child. I had to become the ultimate detective.
Introduction of Thiamine
Through functional genetics, we discovered a thiamine transporter issue. Vitamin B1 or thiamine deficiency had been something I read about the year prior but, at the time, it didn’t tick all of our boxes. Now, I have a deeper understanding of the cascade and perfect storm that probably traced back to in utero. Benfotiamine was introduced on January 1, 2026 at approximately 15 mg/day. Shortly afterward, Bhodie experienced marked behavioral deterioration characterized by increased biting, kicking, self-injurious behavior, irritability, return of previously extinguished behaviors, worsening sleep disruption. After 4 days, we reduced to 3mg a day and documented a dramatic improvement. As dosing was slowly titrated upward during January, multiple developmental gains were repeatedly documented including increased receptive and expressive language skills, processing verbal instructions and from greater distances as well as understanding context-dependent requests. He developed more conversational reciprocity and greater eye contact, and showed increasingly affectionate behavior and greater participation with peers at parks and activities. Sleep improved to 10-12 hour sleep durations, but at times of titration or bottlenecks, we saw hyperarousal and fragmented sleep again. All OCD placing of caregivers ceased. Clothing-related compulsions and shirt chewing stopped and he was better at transitioning and more open to community settings like the grocery store.
January: We started with a combination of B1 Benfotiamine and B2 R5P at a 3:1 ratio. We titrated B1 from 3mg to 35mg. At first, we increased the thiamine only and did not add any additional B vitamins. We kept his magnesium malate at 100mg per night and dietary potassium at about 2000mg a day. During this time, we saw new behaviors of banging the back of his head, hair pulling, and increased hand flapping. He was also more easily over stimulated. By late January, we were seeing flushing and palmar redness. We introduced egg yolks for the choline. He stopped biting but the biting was replaced with more pinching and some hair pulling. By the end of January, he had no OCD tendencies towards placing me around the house or making me zip up/ button my shirts and tank tops. Things that previously bothered him, no longer did. Towards late January, we began increasing b2, but no other Bs and added afternoon magnesium and potassium. This resulted in some relief for the afternoon aggression and agitation.
February: We increased from 35mg to 55mg benfotiamine and 30mg b2 R5P. Magnesium malate remained at 100mg and dietary potassium at 2000mg. At this dosage he was fairly calm, but when trying to increase further he started covering ears often, pinching and biting again, chewing his shirt constantly, as well as being very hyper sensitive to sensory inputs. He would have worse behavior in the afternoon that would usually resolve with magnesium, potassium, and carbohydrate intake. We recorded two new histamine sensitivity type reactions; a reaction to tomato sauce and urinating many times during the night.
March: We dropped back down to 30mg benfotiamine and 10mg b2. Magnesium and potassium remained the same. During an illness, he had his first fever in over a year and a half. In mid to late March, he was in what I would describe as a flare of some sort. We were not sure if it was brought on by illness, chlorine exposure, sulfur pathway congestion, oxalate dumping, spring allergies, or something else like histamine sensitivity. He began eye stimming and head hitting increased again. His sleep became fractured sleep and was once again, urinating more frequently. He had red cheeks and ears, was easily agitated, developed separation anxiety and was aggressive, especially at night or when falling asleep or waking.
April: We continued with 30mg benfotiamine, 10mg b2, 100mg magnesium malate and dietary potassium of 2000mg. He was still aggressive while falling asleep, screaming when driving, kicking walls often, biting, fragmented sleep, frequent urination, and high hand stimming continued even at random times. He was no longer chewing shirts though. By mid-April, Bhodie was showing signs of histamine or some type of sensitivity off and on marked by flushing cheeks, red ears, and a puffy face. It wasn’t clear that one food or supplement was the issue, but seemingly many of our regular things were causing new reactions. In late April he also added eye stimming, spinning, and constant head stands.
May: We continued with the same doses and supplements and by early May he seemed to return to normal behavior. Then in mid-May everything worsened again. He began to urinate frequently at night. His sleep was fragmented. He shook his head back and forth aggressively. Stimming picked up again, as did the separation anxiety, head banging, increased biting, kicking, hitting, pinching, hair pulling, sensory seeking, agitation, crying, and hand flapping. Eye contact diminished and he was hyperactive, spinning, covering ears and grinding his teeth.
In late May, we changed to a 1:1 ratio of Benfotiamine 20mg rather than our previous 3:1 ratio B2 was raised to 20mg, added minerals, added b6 8mg, Epsom cream, magnesium malate 100mg, dietary potassium 2000mg, zinc 5mg. For a short time we added in another 10mg TTFD but it caused a lot of agitation so we stopped very quickly. We removed potential histamine triggers, phenols and salicylates from his diet, including citric acid and any histamine triggers in supplements.
June: Benfotiamine 20mg, B2 about 20mg (1:1 ratio) added molybdenum (glycinate chelate) 50mcg, B6- how much and what form? B6 (form P5P Pyridoxal 5′-Phosphate) 8mg, magnesium malate 100mg, dietary potassium 2000mg, dietary calcium 700mg, dietary phosphorus 600mg, zinc 5mg. Still having some histamine reactions and covering ears. All symptoms were worse on days with low magnesium with more stimming, head shaking, without magnesium.
By late June we increased to benfotiamine 50mg, B2 50mg, B5 pantothenate 5mg, B9 1mg, Biotin 25mcg, B6 P5P Pyridoxal 5′-Phosphate 8mg, magnesium threonate between 50-75mg and 150mg magnesium malate, zinc 5mg. He is no longer having noticeable histamine symptoms but is still fairly agitated. He still bites often and covers his ears but sound sensitivity has definitely diminished from May. Whenever we raise the B1/ B2 past 20mg we see a wired but tired energy and at 2am he wake ups with high energy. We have reverted back to 20mg of benfotiamine and 20mg of B2 (R5P Riboflavin 5-Phosphate) the majority of the time. About once a week we will try to increase, as the clinician thinks he should be on 100mg benfotiamine a day, but usually the next day he is very stimmy, agitated, and sound sensitive. We have tried to push through but we just cannot.
Current Supplements
- B1 (benfotiamine) 20mg
- B2 (R5P Riboflavin 5-Phosphate) 20mg
- B5 (d-calcium pantothenate) 5mg
- B6 (P5P Pyridoxal 5′-Phosphate) 8mg
- B7 (D-biotin USP) 50mcg
- B9 (Calcium folinate) 600mcg
- B12 (adenos / hydroxy 50/50) 2000mcg
- Magnesium threonate between 100-150mg
- SALTT mineral blend: Sodium borate 200mg, iodine 200mcg, magnesium 133mg, zinc sulfate 5mg, selenium 25mcg, copper gluconate .7mg, manganese gluconate .7mg, chromium 25 mcg, molybdenum (sodium molybdate)17mcg, chloride 970mg, potassium chloride and iodide 333mg, boron .9mg
- Zinc 5mg
- Molybdenum (glycinate chelate) 50mcg
- COQ10 (ubiquinol) 20mg
- Phosphorus Powder: sodium (sodium phosphate) 40mg, potassium (potassium phosphate) 70mg, phosphorus 60mg
- Rosehips for vitamin C
- Vitamin c mix: 100mg whole food c, sodium 120 mg, potassium bicarbonate 100mg – (we just started this.)
Diet
- Flax milk with pea protein – Approx. 24 ounces per day: Calories 150, fat 9g, sodium 400mg, protein 5g, d 7mcg, calcium 900mg, iron 1.8mg, potassium 30mg, vitamin A 400mcg, b12, 4mcg, phosphorus 600mg
- Oat & Flax bars (at least 1 pack a day): Approx. Calories 200, fat 3g, sodium 180mg, carb 32g, fiber 3g, sugars 11g, protein 4g, calcium 30mg, iron 1.7mg, potassium 120mg.
- Mango Banana pouches (5x day): Approx. Calories 500, carb 110g, fiber 5g, sugars 75g, protein 10g, calcium 40mg, and potassium 1200mg.
- Mango popsicles (4x day): Approx. Calories 280, carb 68g, sugars 64g, potassium 120mg, vitamin C 52mg.
- Flax muffins (1x day): Calories 140, Fat 7g, sodium 55mg, carb 16g, fiber 2g, sugars 10g, protein 2g, calcium 19mg, iron 2mg, potassium 82mg
- Egg Yolks (1-2 a day): Calories 50, Fat 4 grams, Protein 2.5 grams
- Organic Veggie straws (1/3 bag/ nutrient info is for that amount): Approx. calories 100, fat 4.5g, carbs 15g, sodium 150mg, calcium 30mg, potassium 150mg.
Labs
Blood: Positive ANA & slightly elevated Albumin/ Globulin ratio (1.0:1) reference range [0.30-0.80].
Urine: DD Comprehensive Neurotransmitter (10/2025 before B1 supplementation)
- Low Phenethylamine (PEA) 38 [reference range 42–160]
- Low Tyramine 2 [reference range 2.8–8.5]
- Low Tryptamine 0.038 [reference range 0.65–1.6]
- Low Taurine 107 µmol/g 420–1400
- High 3,4-Dihydroxyphenylacetic acid (DOPAC) 3856 [reference range 540–1850]
- High 3-Methoxytyramine (3-MT) 663 [reference range 122–278]
- High Norepinephrine 103 [reference range 29–69]
- High Norepinephrine / Epinephrine ratio 14.9 [reference range <13]
- High 5-Hydroxyindoleacetic acid (5-HIAA) 13180 [reference range 2500–9000]
- High Gamma-aminobutyrate (GABA) 16 [reference range 2.6–8.0]
- High Glycine 4021 µmol/g 700–2500
- Upper range Glutamate 47 [reference range 18.0–70.0]
- Upper range Normetanephrine 369 [reference range 112–400]
- Upper range Metanephrine 141 [reference range 60–158]
Toxin Accumulations
- High Nickel 21.3 [reference range <8.0]
- Tungsten 1.362 [reference range <0.130] (toxic metals – stool)
- Multiple mycotoxins (ochratoxin, aflatoxin, trichothecenes, etc.)
- High glyphosate
Organic Acids Test
4/2025, before supplementation
- High Arabinose 131 [Reference range ≤50]
- High 5-Hydroxymethyl-2-furoic 110 [Reference range ≤28]
- High 3-hydroxy-3-methylglutaric acid (OAT) 109 [reference range <88].
- High Oxalic (OAT) 301 reference range [35-185]. He was eating a lot of almond based things before when this was done. We have since eliminated the almond based foods.
- High citric 656 [reference range >597].
Stool Test
5/2025, before supplementation
- Gut dysbiosis + pathogens (Klebsiella, Acinetobacter, parasites). We treated for yeast and parasites last year with Albendazole 2oomg 2x day for 2 days & Nystatin 100,000 unit/mL oral 4 ML 3X DAILY 21 days.
Mito swab
6/2025, before supplementation
- Mitochondrial dysfunction (low RC II+III activity) 0.002 (2%) [Range 0.032 – 0.152 (0.092 ±0.03)]
Other Tests
5/2026, 4 months into B1 refeed
- Low Zinc: 4.58 [Reference Range: 5.06–8.57]
- Low Zn/Cu Ratio: 5.6 [Reference Range: 6.16–10.30]
- Low Magnesium: 31 [Reference Range: 32–48]
- Low normal Iodine (Urine): 110 [reference range 100–380]
- Low Creatinine: 20.0 Reference Range: 25–180
- Low Selenium (Se): 0.027 Reference Range: 0.04–0.35
- Low-normal Calcium (Ca): 58 Reference Range: 25–300
- High Copper (Cu): 0.110 Reference Range: 0.006–0.06
- High Sodium (Na): 519 Reference Range: 45–350
- High Cobalt (Co): 5.3 Reference Range: <1.7
- Very High Iron (Fe): 1100 Reference Range: <50
- High Chromium (Cr): 10 Reference Range: <3 – chromium was in his mineral mix
- High Vanadium (V): 1.5 Reference Range: <1 – this was in the mineral mix supplement at 40mcg
Thyroid Labs
- TSH 3.47 H (0.5-3.0 µU/mL)
- Free T3 5.4 H (1.9-4.4 pg/mL)
- Free T4 1.5 (0.8-1.6 ng/dL)
- TPOab 40 0-150 IU/mL (70-150 borderline)
Going Forward
I hope to find resolution of the mystery symptoms that come with increasing dosage of B1. Are this symptoms indicative of a paradoxical reaction or are they relative to increased histamine sensitivity, sulfur pathway congestion, oxalate dumping, or due to some unveiled bottleneck or deficiency. The clearest missing piece is electrolyte/ mineral imbalance or B9, B12, B3 deficiencies. We are not supplementing B3 currently due to previous reactions. He isn’t taking B3 niacin at all, but he is now trialing a nonmethylated B12 2mg and 600mcg of B9 calcium folinate.
We are having trouble finding an electrolyte and mineral supplement he doesn’t react to with agitation and behavior changes within the hour of administration. That may be the quick influx of sodium and potassium or could possibly be a sensitivity to iodine (many have potassium iodide).
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I would like to point out two things that my doctors taught me back in the day.
Simply put, the body will use the lightest mineral in each column of the periodic table 1st, and is designed to do so. The lightest mineral is at the top of the column on the table. If the top one is not available, it will use the next one down. And if that was not available, that process continues. It can only use whatever minerals it has available.
Your son shows high tungsten. Tungsten is below both chromium and molybdenum on the periodic table. A deficiency in these two minerals will force the body to take up more tungsten than what it would usually; it will use it in place of the chromium and molybdenum (both lighter minerals) that it does not have available in the diet. So you might consider a mineral supplement that contains higher amounts of these two minerals. The added chromium and molybdenum should displace the tungsten.
A good doctor back in the day theorized that many of the autistic kids showed high levels of mercury because they had been severely zinc deficient. The body was picking up mercury and using it in place of the zinc that it did not have available. Possibly after getting the vaccines that contained mercury.
Just saw your child has high chromium. So obviously what I wrote would not apply. Sorry I cannot correct my post!
I found I have the genetic condition called pyroluria. What it does is make one highly deficient in zinc, B6, and taurine, as well as some omega 6. This is a urine test and the results come back with a score; my score was in the high 20s, which is typical of mild autism. What happens with the zinc deficiency is that since there is a lack, the body will take up other +2 metals instead, like mercury, arsenic, lead, cadmium, in amounts that someone without this disorder will not have. So the levels of these can be very high and produce many of the symptoms you are working with. It is well worth taking that test — clearly I inherited it from my mother; she and I shared the symptom of extreme light sensitivity, which for me went away when I started getting adequate zinc; I also chelated the “bad” metals before i knew about the pyroluria, so when I did start the zinc, I didn’t have to deal with dumping all the metals I had already chelated.
Just giving you info you might not have and might want to investigate. Best of luck with your son and your family.
Yes yes yes! I was actually going to post this same thing. We use lower doses than called for in the formal protocols. They were a game-changer for our whole family. Even my kids who were “fine” but struggling with anxiety. It is the most overlooked treatment in the autism world in my opinion.
Textbook B12. Needs injections (you and probably the child). The child’s diet needs fish and meat or x4 the amount of eggs.
B12 did NOT work for us—the MTHFR mutations need to be looked at first. A huge cohort of kids on the spectrum have extremely high B12 levels—because they are not processing it correctly. My own last blood test showed B12 levels at 2,000% of normal. Yikes.
Hi Amy,
“maternal migraines and dyslexia, pins and needles in hands or feet, frequent nausea, knee and joint pain along with muscle weakness and fatigue”
This sounds like textbook severe B12 deficiency / pernicious anemia. I’d try B12 injections asap. Normal blood B12 is irrelevant.
“child’s irritable nature, diarrhea, heat intolerance, food selectivity (less than 10 foods), insomnia, foot drop, and unwillingness to use his hands.”
Once again, textbook B12. Don’t know if kids can be injected but B12 supplements can’t solve B12 deficiency.
Also, that is a devastating diet that will limit brain development. I am truly speechless. Is he being forced to be vegetarian? Devastating. At the very least, I would quadruple or quintupple the eggs per day which are the only nutritious element is that child’s diet. He is essentially starving. I get he has a limited diet, but this kid needs real milk, melted cheese, bacon, meat, etc to save his life. And above all serious B12.
There is a website with B12 symptoms checker b12d dot org
All the best.
No he is not being forced vegetarian he has severe food aversion, there is no way to force feed him other than a G-tube. He has previously been on high dose B12 and it didn’t bring much change in the symptoms that’s how we found B1.
My son also had severe food aversion. Though I did not come across this until several years after, zinc deficiency can cause a condition where a person is literally not able to eat because the food tastes like dirt (or worse) to them. This was discovered I believe during World War I when doctors were studying severe malnutrition. They came across people, adults, who were not able to eat even if food was presented, to the point of death. My son acted this way, literally choking down his food. I would sit at the table for an hour or more trying to get him to eat. It was horrible.
Hi Amy, I wish you all the best. Have been through this and thiamine has been great for my son. I will say we got nowhere without radical diet change. Meat and veggies only (can be introduced slowly) and eventually fruit too.
Hi Amy,
Wish you all the best. IMO critical to lower exposure to mold and glyphosate. Must consume sufficient choline and omega 3s for B vitamins to work. https://www.youtube.com/watch?v=VrP8SG7q8cc
Hi Amy.
Manganese is always low in autism & Thiamine and manganese have a special relationship… Magnesium & Manganese are required for thiamine storage and mitochondrial health plus many other critical systems. Amso, manganese is a key electrolyte so it could be a missing link there.
I see very high iron in test and you would need to boost manganese to lower oxidative stress. That amount of manganese probably needs an increase to 3-7mg instead of only .7mg
Please do a lot of research on Manganese…hope you find it extremely helpful and enlightening 🙂