toxic heartache

As I begin writing this I am weeping—weeping for my child who I may have, in some sense, unwittingly poisoned with P5P, aka coenzymated vitamin B6.

Late last week, a nurse phoned to give me some results of a routine blood draw Calvin had done. He had given a total of seven or so vials of blood to test his thyroid function plus a customary metabolic panel, complete blood count, manganese, magnesium, copper, ferritin, D and B vitamins. Initial results came back normal with the exception of a low white blood cell count, indicating he might have a virus contributing to his recent spate of grand mal seizures.

Friday, however, she called back with some alarming results: Calvin's vitamin B6, a test which I'd requested for the first time and as somewhat of a fluke, was 144. Because the reference range for a child his age is a mere 3 to 35, the covering pediatrician suggested I immediately discontinue Calvin's B6 supplement. The nurse went on to inform me that vitamin B6 toxicity can result in things like flushing, tachycardia (rapid heart beat) and headache, all of which I've witnessed recurrently in Calvin.

For at least a year and a half I've been giving Calvin the B6 supplement, which was recommended to me by a functional medicine specialist, and signed off, reluctantly, by his pediatrician. The supplement, if I remember correctly, was meant to boost Calvin's immune system and perhaps to facilitate the production of GABA, which Calvin's brain is craving during his protracted benzodiazepine withdrawal. I was advised to initiate him on 50 milligrams per day, then at some point later I increased it to 100 milligrams daily when Calvin's seizures worsened. No one advised me to check his B6 blood level so, foolishly, I never had; I should have known better. Somehow, for whatever reason and perhaps subconsciously, this time I did.

After hanging up the phone, a million thoughts went through my head:

could his tachycardia and flushing be due to B6 rather than from seizures? could his tachycardia trigger seizures? could his tachycardia weaken his heart? has he had a persistent headache all these years due to B6 toxicity? are the symptoms i usually attribute to benzodiazepine withdrawal actually due to B6 toxicity? why didn't i research B6, its dose limits, its contraindications, its toxic side effects—like i have for years for all of his other meds—before giving it to Calvin? how could i be so reckless?

Just before writing this I went online to research B6 toxicity. I learned that Calvin's dose, according to his age, should be roughly one milligram per day; he was getting fifty to one-hundred times that for well over a year! I also learned that vitamin B6 toxicity can result in abnormal heart rhythms, decreased muscle tone, drowsiness or sedation, feeling of tingling on the skin, headache, heartburn, loss of appetite, nausea, rash, stomach discomfort or pain, sun sensitivity, and vomiting. 

I wondered if some of Calvin's finger snapping, and leg and arm rubbing are due to B6 toxicity. I went on to read that B6 toxicity can cause one to have muscle pain or trouble with walking, can interfere with one's proprioception, and can induce seizures. Is this why Calvin is stubborn and so often wants to drop down while walking? It can also interfere with the way that the body processes certain herbs and supplements which utilize the liver's cytochrome P450 enzyme system (e.g. cannabis, as does the benzodiazepine clobazam) and that, as a result, the levels of these may be altered in the blood or may alter the effects that they have on the body's P450 system. Having gained knowledge of cytochrome P450 during my research on cannabis over four years ago, had I investigated B6, I would have easily come across these factors—details that the functional medicine specialist and the pediatrician likely weren't aware of—and, with little doubt, I would have objected to giving the supplement to Calvin.

Since beginning this post, my tears have dried, having taken Calvin with me for a morning stroll through the garden. He was mostly compliant and seemed happy to be outdoors on this sunny morning, the birds chirping and flitting around us, roses and day lilies flaunting their brilliance. I sit here now wondering—hoping—that the discontinuation of Calvin's B6 supplement will result in the disappearance of any pain, tingling or weakness he's been suffering, and perhaps even result in the decrease of seizures. I also wonder how its absence will affect the levels of cannabis and benzodiazepine in his blood and how that might present in terms of seizure control, behavior and other side effects. It may prove impossible to know for certain.

My main fear and cause for great heartache, however, is that I've poisoned my child to the extent that the effects of B6 toxicity might be irreversible. He suffers so very much from one moment to the next and it pains me to think—in the absence of most of parenthood's joys that were spirited away two weeks before Calvin's birth along with much of the white matter in his brain—that the child I do have has been further damaged by the substances we've given him in some blind attempt to make things better.

Glimpse of a good moment: Calvin with Gma Kolster and Abby


  1. Hugs to you and Calvin. What to do when medicine has failed you? You try to find better. One of the things that is so upsetting is how little doctors know about drug interactions, not to mention supplements. They depend on pharmacy to keep them straight on prescription Meds. You go outside their circle of familiarity and you are in the wilderness.

    It's a sore spot to me how naturalists who have holistic supplements know even less about interactions. Even when the info is out there, not something Tory check. You throw cannabis into the mix and it's all up in the air. No clinical trials at all it can be another lifetime before they are done, and your need is now. You do the best you can. I'm sorry.

  2. Christy, hang in there. I'm so sorry to read this post, but so happy that you chose to test the Vitamin B levels. I'll keep my fingers crossed that dropping the vitamin B helps quickly. Biological systems are resilient, and so are you and Calvin. He has you, the best possible person in his corner fighting for him every day! Hugs and love!!

  3. I JUST had a similar conversation with a dear friend and fierce mother. We've all been here. We have. And we cried too. All the pieces, choices and feelings can come together in heartbreaking/head exploding ways . . . How are we to know anything? It's all such an angry mystery. I honor you for fighting with it all. It's just bullshit. I'm here in it with you too.

  4. Oh, my dear. As parents, we are constantly having to second guess our best efforts to help our children, without a road map, without a compass, without... so much we need and deserve. And sometimes it sucks. Love and honor to you for your bravery in the face of all of this hard, hard stuff. I would wish for a parent like you if I were Calvin. I'd be blessed. B6 and all.

  5. Oh Christy -- don't be too hard on yourself. B-6 deficiency can also cause seizures. You don't know if his level has been elevated for years, and you don't know whether his symptoms are due to whatever else. It's all so difficult, such a clusterfuck. And scary. I really don't know how we do this.

  6. You were doing your best. I hope Calvin is feeling better soon, and you as well.

  7. Christy- you are doing all you can to make this a better world for Calvin. You pour your love into everything. You are so dedicated and persistent. I am sure Calvin loves you for all you do. I miss you, old friend. Xx Shell

  8. From the bottom of my heart, thank you for sharing your story.
    My 3 yr old was on 1000mg of Keppra Daily and we were giving 50mg of B6. He came off Keppra and I stopped B6, and since he has been doing SO much better... I thought it was the Keppra, but I am now wondering if the B6 was hurting him

  9. Dearest Christy, You are out there having to navigate without a chart, because the chart hasn't been written. You are writing it, and others will benefit from your generosity and honesty. Much love, Ann

  10. Christy,
    You are navigating what can be a cruel and inexplicable world. You are doing all you can with a fierce and tender love for Calvin - and helping so many others along the way. Sending love and understanding, mother to mother, friend to friend.

  11. Please don't beat yourself up about this! You have done and continue to do all in Calvin's best interests. B6 is considered to be one of the "water soluble" vitamins so why would it occur to you that it could be overdosed? His doctors knew you were providing it as a supplement so why didn't any of them think to check for toxicity? My best to you and your sweet boy. EVERY child should be so lucky to have parents such as you and your husband!

  12. Why was a child on benzodiazepines?? What is happening to this world

    1. they are regularly prescribed to control seizures, both as maintenance drugs and for emergency drugs. sickening.

  13. Do you know about the Facebook group called Healing B6 Toxicity? They may be able to help.