Healing our daughter with thiamine and vitamin K2

Healing Our Daughter, Healing Ourselves

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Our Little Tadpole

Abby is our little tadpole. Sensitive to seemingly everything, she morphed into something she should never have been. Many people openly stare quietly, thankful their kids aren’t like her and go about their business without much thought. Or worse were those who only stood by saying “God, somebody DO something!” when our daughter was screaming in pain in public as if WE weren’t there. There is much to be learned from them, if we only had eyes to see. We’ve made mistakes in our journey with our daughter, but the 10 specialists we’ve taken her to in the last nine years have provided numerous test results with little to no answers. The last allergist I took her and told me to “stay off the internet” as he was handing me free pharmaceutical samples as I was walking out the door. They made it as far as the trash can in the restroom. And so began our journey of doing something different, looking for answers outside of what we’ve been told. In our journey to heal our youngest daughter, we are healing ourselves too as we all seem to be dealing with very similar issues of low stomach acid, connective tissue dysfunction, and nutritional deficiencies/dependencies. I will start with her story first, since it is because of her that we’re figuring ourselves out.

The Early Red Flags: Hypermobility, Digestive Issues, Speech Problems and Intense Reactivity

Abby was adopted from China in September 2010 at the age of 10 months. Her birth and family history is unknown. She was found in a very poor district at three weeks old, underweight and jaundiced. She also had a congenital heart defect called atrial septal defect, which later closed up on its own. She was kept in ICU for a period of time. She was bottle fed until 10 months, then introduced to gluten and dairy. Orphanage caregivers reported she had a much heartier appetite than other babies (an early red flag that we all missed).

When we adopted her, we found her to be a very happy and social baby, who transitioned well. Her eye contact was always good. We did notice, however, her hips, elbows, knees, and fingers were hypermobile. In hindsight, we recognized that she played differently with infant toys. More red flags.

  • In October of 2010, she had her first post-adoption doctor’s appointment.
  • In December 2010, she was walking on her own. She tested positive for TB exposure and put on Isonaizid. She tested negative for lead. She became ill and was in pain for 10 days with diarrhea 3x day. We switched to Rifampin for the next 6 months. She was on Isonaizid and/or Rifampin from December 2010 through July 2011. Anti-tuberculosis antibiotics required monthly liver checks. She was vaccinated during this time as well, a mistake we came to regret. Our once happy child now became stoic and would remain so for nearly a year, but things had changed.
  • In spring of 2011, she experienced continuous and severe congestion along with loose stools.
  • In July we stopped Rifampin. She was a good eater, often ravenous.
  • In spring of 2012 we began speech therapy, 3x per week, but progress was slow. After removing gluten she spoke her first three word sentence.
  • July 2012 her hearing was checked. “Possibly mild frequency decrements. Minor issues”.
  • July 2013, probiotics stopped her diarrhea, unless she was exposed to a problematic food.
  • In 2014, we found she was a MTHFR 677ct double mutation. We strongly suspect she has a CBS mutation due to very strong reactions to various things: ALA, NAC, Epsom salts, CLO, methylated B12/Folate. Though over time, some of these we have been able to get in her in small amounts.
  • Over the next few years, and a multitude of negative tests, all we were able to determine was that her B12 levels were consistently high, even when not supplementing much, as were her B6 levels (though iodine brought her B6 levels down into the normal range). Creatinine was low, and a few amino acids were only slightly elevated. Prostaglandin F2 were extremely high and liver enzymes were elevated.

Despite all of this, Abby is a very happy, socially engaged and intelligent girl. Her speech has always been intermittent, ranging from very slurred to full complete clear “normal” sentences. It switches at random. Her former teacher of 5 years doesn’t think it is ASD, but in truth, it doesn’t really matter. Our kids are often labeled for the convenience of others.

Altered Pain Sensitivity

Abby appears to have a high pain threshold, except stomach pain. Since she was young, she has preferred to be barefoot and wore few clothes, even in winter. Over time this has changed and she has grown more “normal” in her body’s adjustment to temperatures.

The only observable nervous system affect was that she tightens/clenches her fingers when very excited. Excitement seems to trigger degranulation in her unstable mast cells. She had been extremely reluctant to draw, write, or color when young. She’s doing all this now, not as age-appropriate, but gaining.

She has had many problems with probiotics in the past; often creating an immediate OCD/stuffing whatever she could get her hands on behavior, under furniture, peeling birch tree bark for hours, etc.  Her brain was almost immediately affected.

Severe Reactions to Triggering Substances

Trying to solve her medical problems has been difficult. She has had so many reactions in the past when trying various vitamins/minerals and supplements recommended by her physicians. The results were always mixed and reactions could be extreme. We often, and still do, dose her vitamins and minerals separately, mixed together. Many reactions were not to the main ingredient, but to the binders or fillers added to the supplement. Some treatments would spur a short snippet of normal speech but only 1-2x then nothing more.

Below are the symptoms that we have been navigating.

  • Dry, itchy skin. Rashes, hives, angioedema, large welts from some foods/chemicals and insect bites.  Her skin feels like it’s on fire and she tore at her clothing after a small amount of Pure Vegetable Glycerin (99.9% pure) was applied. In 2015, her skin peeled off her arm, wrist to shoulder in a 3” wide band of deeply reddened dry/cracked skin, after eating non-organic strawberries. It looked like a third-degree burn, minus the blisters. Epsom salts, baking soda, Vick’s Vapor Rub, various other skin oils like jojoba, or almond oil, all caused painful reactions.
  • Severe abdominal pain. She experiences severe abdominal distress and pain after ingestion of various foods or charcoal-grilled food. She may also develop constipation/diarrhea, headaches/migraines. Probiotics often dramatically changed her behavior within an hour to severe OCD. Fruit-based digestive enzymes would cause facial rashes and behavior changes. Pancreatic enzymes caused much less speech, very quiet per her teachers.
  • Urinary. She was unable to urinate 9+ hours after ingesting cough syrup on two occasions. She was not dehydrated either time. She formerly had urinary incontinence on occasions and enuresis. The enuresis resolved with the addition of vitamin K2 MK7.
  • Insomnia. Occasionally she would develop insomnia, often after ingesting or exposure to an offending food or chemical. Tap water seems to be particularly problematic.
  • Behavioral. She has experienced severe OCD, irritability, extreme aggression/anger, hyperactivity.
  • Heart and Lungs. She develops a rapid heartbeat at rest and persistent coughing for 6+ hours following ingestion of a trigger.
  • Head and nose. Congestion, puffiness/eyes, headaches/migraines (based on focused tearing behavior).
  • Speech Problems. Her ability to speak various greatly relative to exposures. It goes from single words to full clear “normal” sentences. With gummy vitamins, recommended by her doctor, she developed a very notable and immediate regression in speech when she was four years old.  The day before she took the vitamins, she had clearly-spoken emerging speech, i.e., “I eat” “I do” “I wash”.  Immediately after giving her the vitamins, she walked about the entire day just saying “mmmmmm” over and over. Unsure of the cause, I was thinking dyes, rancid hydrogenated oil, or some such.  I would not make the sugar connection for a few more years.
  • Severe pain after exposures. She had a strong reaction to Cassia cinnamon. In class, she and other children were making Christmas ornaments with lots of Cassia cinnamon. Although none was ingested, her teacher said she was inhaling it and handling it for hours. Near pickup time, the teacher said she was not feeling well, began to be irritable, like her head hurt. As we were walking out of the building, she went down fast onto the ground and began writhing in pain (not sure if head or gut related). Teacher held her head to keep her from hitting it on the pavement, while I ran to get my Lavender essential oil rollerball. Applied it, and within a few minutes she was fine and got into the car. No further incident. Ceylon cinnamon causes no problems. Cassia can affect B1 levels, or so I read.

Our Journey to Healing Began With Vitamin K and Thiamine

In October 2018, we learned about thiamine and suspected that many of her problems may have been the results of a longstanding thiamine deficiency. We began in August slowly increasing Thiamine HCL. She began to improve at school, but results were inconsistent. We then moved to Benfotiamine for a while and results seemed better, but still inconsistent. By October, she was taking Sulbutiamine and we worked our way up slowly to 200 mg. Organic Acid Test (Great Plains) showed her lactic acid levels came down with the addition of the high dose of thiamine.

Nighttime enuresis persisted several years beyond toilet training. In 2016, we added approximately 700 mcg of vitamin K (MK7) working up slowly to this dose and her nighttime accidents completely stopped. The addition of vitamin K (MK4), reduced her food intolerances and allowed her to eat a broader diet, but that form of the vitamin did not stop the enuresis, the MK7 form did. We have since lowered her doses and now she just takes a D3/K2 liquid form with no return of the enuresis and food tolerances seem good, though we monitor her diet closely.

We use a variety of homeopathic remedies to treat reactions, illnesses, and injuries and reduce chemical exposures at home. Once her lactic acid levels came down into the normal range with the thiamine, we were able to add probiotics without negative reactions.

Her diet is mostly organic, grass-fed beef, organic chicken, wild-caught fish, cage-free eggs, local raw honey, coconut and olive oil, ghee, no GMOs. MTHFR mutations seems to be sensitive to gluten and dairy, but I wonder if that’s because of our need for the TTFD form of thiamine. She has been sugar free since July 2018.

My Big Takeaway: Healing Requires Resolving Nutrient Deficiencies Dependencies

EDS and ASD both share very similar nutritional deficiencies and/or dependencies. I wonder how much of autism isn’t simply the undiagnosed trio of EDS/MCAD/POTS. As most genetic testing is beyond the reach of most family budgets, it is difficult to know. It seems like it would be worth looking into one’s broad family history. A friend once told me that the foods we crave the most can be our biggest problems.

Years ago when Abby was in preschool, her teacher had me in for a conference. She showed me her notebook, which sadly only had a few scribbly lines in it. She slowly closed the book and moved it to one side. She looked me straight in the eyes and said “this isn’t autism”. Her son was on the spectrum. She said “Abby is smart, very, very smart. I think she’s gifted”. I looked at her dumbfounded, asking “then why?”.  She said, “I don’t know what’s going on, but she knows… she knows!” She proceeded to tell me something Abby did that proved to her unquestioningly her assessment. Giftedness and learning disabilities seem to share many commonalities.

We sort of figured some things out in reverse. For example, the MK4 form of vitamin K2 allowed for more food tolerances, and the MK7 stopped her enuresis. Bacteria in the gut (bacillus subtilus) produces K2, but then too much lactic acid was a problem because her thiamine was low and the CBS mutation seeming caused trouble as well. K2 seems to be very important in the distribution of calcium in the body.

We often see admonitions to heal the gut on the internet; so many opinions and recommendations. As Abby’s case suggests, it is far more complicated than simply taking a probiotic. It is also highly individual. Our daughter’s journey may not be applicable to someone else, but perhaps something can be gleaned.

We continue to avoid triggers, eat and live clean, heal the gut, use holistic remedies, play and laugh a lot. Thankfully, her reactions are now infrequent and fairly mild, but it was long road to get to this point. Her appetite is now normal with no real cravings or hunger extremes. We use vitamins/minerals, fish oil, and probiotics less cautiously now. She is gaining speech rapidly. She may still not be typical, but she is a far cry from what she had morphed into and much more normal than even a year ago.

We’ve been fortunate to avoid prescription drugs overall and use natural remedies, diet, and vitamins and minerals to affect change. We are avoiding further vaccinations, as our belief is her body has had enough and can’t deal with the stress at this time. Overall many people’s demeanor changes rapidly when mentioning alternative approaches to western medicine. If outside the norm, we may even be deemed a quack, but since we’ve been able to heal various family members of numerous ailments, if we’re seen as strange, so be it.  We can heal our bodies, probably not 100%, but often without prescription drugs.

Perhaps even the most complicated puzzles among us are not as hard to put together after all. We are still healing and our journey is not over. We tell ourselves and our kids to eat less junk because a nutrient-dense diet is helpful to everyone, but it seems that it is even more vital to those who suffer both the blessings and curses of a good brain.

Our brightest lights are ever so vulnerable.

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This story was published originally on August 19, 2020. 


  1. This with high Vit B12, how is that linked ? got a family member with high B12 , over 1500 and also high Folate. Do we need to supply with Thiamine, Magnesium,Gluthioane and Potassium to get it down ?

  2. Being gifted is what delayed me to be seen as autistic ( High-functionning-Asperger’s ). As I have trained in somatic Experiencing (without them diagnosing though based on the polyvagal theory! The link to my blog is my Somatic inspired blog), I can tell what I think makes some people be born with some variations in the Nervous System, in particular the brain stem and autonomic nerves like the vagus. The ANS simply and beautifully adapt to any trauma, and you can see it as blind people developping better their other senses.

    So I see ASD as both an issue (something is impaired) and a possible adaptation as a sort of post-traumatic growth! I do have a few specificites, and they just have not been seen nor developped. the most important to know is the word SPECTRUM, because tests will show you that non autistic people can answer yes to the same as autistics, and the diagnosis just depends on HOW much is different. After all, everybody has had to adapt to some trauma! I see it as very probable that part of it be hereditary, but genes also need to be activated, on or off…

    As I commented for your other daughter, have a better look at oxalate and maybe also check a possible reaction to molds (this worsened my thiamin issues a lot). As I saw you mentionned MSM, which means sulfur, this helps in case of oxalate, and B1 helps oxalate too, it is all related! For example, candida hides in oxalate crystals.

  3. Thanks Joann.
    I’m 155 ib’s – your dosage would be like taking nearly double what i am on. (600mg)
    I wonder if i should go slowly up to 500mg for a month or so just to see if i notice anything

    I am from the UK and ttfd is very expensive here. I can import allithiamine and it’s not too bad.
    FYI you can buy “thiamax” this has no fillers at all. I’ve ordered 2 of these as i can’t obtain allithiamine at the moment, but it will end up costing me over £60 per month at the dose i am on, let alone more.

    There’s quite a bit of research i read recently against fish oils, even though I only used ‘rositas’ which is cold pressed and treated with care, clean etc. It can exarcebate muscle aches etc etc therefore I’m experimenting with removing this for 4-5 months as that’s how long it takes to reverse the debt.

    I’ll keep hunting, thanks for the feedback

  4. Joann,
    How long did it take to resolve? I’ve been on allithiamine for 4 months – 350mg.
    Incidentally i tried sulbutiamine several times and even a tiny amount of that gives me diarrhea .

    Where are you sourcing the ALA? – I’ve recently incorporated that myself via flax seed oil, i also get a balanced omega 6 from safflower oil and pumpkin oil after reading the research from brian peskin and how others resolved lactic acid build up from exercise.

    • About 3 months in her and I used 200 mg. She perhaps was 55 lbs at the time. We’ve all tried Lipothiamine and Allithiamine, but ended up going back to Sulbutiamine (order it direct from Double Woods). The first two have magnesium stearates in them and in the past the stearates would cause diarrhea in our youngest. Though this doesn’t happen anymore, I’m still wary of them because we all have EDS/mast cell dysfunction and are pretty sensitive. I read somewhere that stearates can suppress T immune cells and this can be a problem for people with some mutations (like CBS). From our own family’s experience stearates did cause problems. Though many people are fine with them. It’s not always the main ingredient causing problems, but the binders/fillers and other ingredients often added. We trust Pure Encapsulations for ALA and our multis. We had tried an “Allithiamine” (not Ecological Formulas) earlier this year without stearates and found within a month we were all showing signs of thiamine deficiency symptoms again (pay attention to those negative reviews on Amazon!) I try to avoid buying vitamins off Amazon. We are finding greater success lately with the Nordic Naturals omegas than other brands we’ve tried over the years for reducing inflammation. Also D3/k2 seemed to play a significant role in healing too.

  5. Being speech delayed it’s hard to say. When young she often wanted carried especially going upstairs as if her muscles may have been hurting. Since adding the TTFD she has no issues getting around. Lots of outdoor time, long hikes. It was about 3 months between testing in which her levels came down. Her lactate levels came down on Sulbutiamine (that was several years ago), but the addition of a little ALA a few months ago seems to be doing even more. I’m pretty sure there are malabsorption issues (not uncommon in EDS) due to probable infection/s that cause her mast cells to degranulate easily and those we’re still addressing. Hope that helps.

  6. You mentioned your daughters lactate levels dropped.
    Did she suffer with muscle burning in her thighs and or calves?
    If so, did this resolve the muscle pain and how long did it take?

  7. There are 2 major clues: elevated B12 and low creatinine. This strongly suggests thiamine and magnesium as supplements. Ehrlers Danlos is a form of dysautonomia and suggests thiamine deficiency.

    • I forgot to mention something about the teacher’s inspiration that the child was “gifted”. It is extremely important because “gifted” kids have a greater risk from inadequate dietary (or supplementary) thiamine. This is because a “gifted” brain requires more energy than a “non gifted” brain and the supplementary thiamine had resulted in an increase in energy synthesis. We learned this because we became aware of a group of girls who had received Gardasil vaccination. All of them developed POTS that had crippled them and a blood test called transketolase was available at that time and all were thiamine deficient. The discussion among the mothers was interesting because they had observed that each of these affected girls had been exceptional athletes and students before they received the vaccine. This also strongly suggested that the vaccine had acted as a non specific stressor. Stress like that requires an energy dependent response and the extra demand had precipitated a more severe thiamine deficiency superimposed on an asymptomatic degree of dietary OR genetically determined deficiency. It suggests that diet has to be excellent when receiving any form of vaccine.

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