Why does my b12-deficient child continually need more b12?

[amandaabrams]

I really, really need help from the wise folks here. My 6 year old son has been suffering from a b12 deficiency, I believe, for the last few years. He was a vegetarian since birth and I was a vegetarian for 20 years before that, and my guess is that he didn't get enough b12 from me originally. At age 2.5, he started mentioning being "sad" out of the blue once every few months, and it became more common over the years (and he's not at all depressive by nature). At the same time, he became paler, more tired, lost his appetite, developed coordination problems, and his hands were always cold. At age 4.5 his b12 was tested and it was 1100, very high for a boy who ate an almost vegan diet. I still don't understand why the level was high.

We started giving him fish when he was 5 and he got worse for a week, and then got much better. After that I started giving him supplements, beginning at 30 mcg, and I always noticed an improvement in his symptoms w/in 24 hours. But the problem was that after 1-2 weeks, that amount wouldn't be enough and I had to increase it. So from 30 to 60 to 125 to 250...now he's taking 3000 mcg b12! That seems like way too much for a little boy. And yet if I decrease the amount, he instantly gets sad, his skin gets greyish, he loses appetite, etc.

He's never had shots; we've seen several doctors here in the US, but they've never been helpful.

A month ago, things suddenly shifted. My son's face finally got its color back, and he no longer could tolerate folic acid (it began to make him crazy), and he needed much more potassium. So I thought he was finally healing and close to being done. But that's not the case. He's doing ok right now, but not amazing; his color isn't as good as it was last month, and he has frequent bellyaches, possibly from constipation.

I'm still convinced that b12 is the issue; he's otherwise super healthy, doesn't get sick easily, and is naturally a cheery, confident fellow.

Sorry this is so long, but can someone help me? Either with a suggestion of a doctor or expert here in the US whom I can talk to (even just by email), or just the wisdom of whose who've been through this. Why does my son continually need more b12? That's my big question. And when will he finally be healed?

Thank you!!

[TACCT]

Your son was probably deficient at the time of birth and had little b12 storage which I guess is used up in following years. Now the little b12 amount you supplement with is used up fairly quickly. Remember your son is growing up so he probably need more b12 to function during these years. Also human body cannot absorb more than 10-20mcg at a time from oral supplements. You mentioned that his levels were high which sounds like he doesn't have absorption issues. I am not sure what has caused this, his body might be lacking capacity to transport b12 from blood to cells. I suggest that you try to find some hematologist or related specialist and they can investigate better. If need be they can give him shots to recover from symptoms. Wish your son get better soon.

I am not a medically trained person.

[amandaabrams in reply to TACCT]

Thanks, I appreciate this. I keep telling myself that maybe it's normal, w/ that kind of a deficiency, to need this much b12. All my son's bloodwork is great except his b12 level, and at this point he's taking supplements so he SHOULD have a high level. And I really don't want to take him off them for 3 months to find out his "real" levels--he would get so depressed and it would break my heart. But w/o firm lab evidence, the doctors haven't been helpful at all. We've also seen nutritionists, psychologists, etc.

[BirdlessBox in reply to amandaabrams]

Perhaps you could get the other types of tests done. I read some things about being careful with Folate - someone here more experienced could probably explain better.

[Gambit62 Administrator]

unless you were deficient when you gave birth I doubt that lack of B12 at birth was the issue. The body is very good at prioritising supply to foetus during pregnancy - one reason why interpreting B12 levels during pregnancy (and breast feeding) can be extremely difficult.

Have you consulted anyone about his current gut issues? I think this is probably your best bet at the moment for getting to the bottom of what is going on.

It may be that he need high B12 levels due to genetic factors - there are a number of variants on a number of genes that can affect the efficiency with which cells use B12.

[amandaabrams in reply to Gambit62]

Thanks for your message. I do think I was borderline deficient when I had my son. We've seen a gastroenterologist a few times but she mainly thinks my son has constipation issues--that's so common among kids that she hasn't looked for a reason.

Gambit62, I saw you mentioning elsewhere on this site that sometimes people do need increasingly more b12, for some reason--their bodies get accustomed to a high level and they need to increase it? Something like. If that was you, can you clarify? Thanks!

[Gambit62 Administrator in reply to amandaabrams]

B12 loading shots or raising B12 levels above normal range seems to trigger a reaction that means post loading shots people need to maintain higher B12 levels to function - the mechanism/cause isn't understood. My experience is that this is a one-time change. Not come across it as incremental increases in the way you mention with your son.

[BirdlessBox in reply to Gambit62]

Could you please point me in the direction of more info about "post loading shots people need to maintain higher B12 levels to function". Thanks.

[Gambit62 Administrator in reply to BirdlessBox]

magonlinelibrary.com/doi/ab...

and an article about research

pernicious-anaemia-society....

[BirdlessBox in reply to Gambit62]

Thanks Sorry, perhaps I didn't quote enough of what you said, I was interested in the triggering of a greater need for B12 by having loading shots. The studies in the links you gave are interesting but I cannot find the info I wanted in them. I am wondering about the choices to make, so much literature says if you have neurological systems get injections every second day (+/-) until there is no further improvement. -But is this a Mistake? Will it set you up to be more vulnerable to restricted access to treatment in the future? How many, how close together, might trigger this reaction? Someone somewhere in here said they preferred the (Dutch?) one per week option as it's safer(?) -can't remember how they worded it.

[Gambit62 Administrator in reply to BirdlessBox]

the nearest I can get is this article on the use of high serum B12 as a diagnostic tool for some conditions that raise serum B12 (liver and kidney problems).

Functional B12 deficiency is a symptom of these conditions and the rise in serum B12 levels is generally just significantly above normal range rather than being over the measurable range

watermark.silverchair.com/h...

Unfortunately it doesn't go into the details of exactly what the mechanism is that allow passive absorption

[BirdlessBox in reply to Gambit62]

Thanks, but I can't access the link you sent.

[Gambit62 Administrator in reply to BirdlessBox]

it doesn't seem to work for everyone

try this link

academic.oup.com/qjmed/arti...

[Hidden]

Has he been checked for coeliac....try gluten free diet....

[JanD236]

Can I ask how you knew he needed much more potassium and also how you gave him more potassium?

[amandaabrams in reply to JanD236]

Lots of observation, reading, and trial and error. I could tell something was off with my son and the pattern wasn't the same as what I've gotten used to seeing with b12. I noticed that my son seemed better after eating a salmon sandwich or eating lentil soup, and read somewhere that potassium is a key "cofactor"--one of the main ones I wasn't already giving him. So I really focused on increasing his intake of fresh food w/ potassium (chicken, milk, melon, raisins, potatoes, avocado, etc), and it helped right away--often w/in 30 mins! But it's hard, b/c he's 6 and I can't fully dictate what he eats

[clivealive Forum Support]

Hi amandaabrams Your very own Sally M. Pacholok R.N., B.S.N. in her book “Could it be B12? – an epidemic of misdiagnoses” includes in her list of people at an elevated risk of developing a Vitamin B12 deficiency in addition to Vegetarians:

"Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency".

I wish you and your son well.

[BirdlessBox in reply to clivealive]

And in her film, which is pinned on the Facebook page, is the story of someone who had the same problem but with worst outcomes. Very lucky you are on to it and being so proactive.

[amandaabrams in reply to BirdlessBox]

Thank you--that's actually how I feel too (lucky).

[Ashweb901 in reply to amandaabrams]

I’m seeing a hematologist this month at Cleveland Clinic bc a retiree hematologist here where I live in Nashville said he thinks I might have a genetic variant that isn’t “too” detrimental (because I didn’t even get Dx’d with B12 issues til age 25) but still needs looking into bc I’ve had breast cancer.....so are you near Cleveland? I can ask my doc for a pediatric referral.

[amandaabrams in reply to Ashweb901]

Unfortunately no--we're in North Carolina. Thanks, though. It sound like a hematologist would be the answer, though--I haven't even been sure what kind of specialist would be the best fit, so that's helpful.

[Ashweb901 in reply to amandaabrams]

Yes - a pediatrician can run MMA and homocysteine but hematologist is a next place to start if you can find one that takes pediatric patients. I haven’t gotten much traction with my gastroenterologist. I have major major constipation as well, plus extra feet of (redundant) colon. So my gastro has always said, “the transit time for you is what is causing your constipation.”

[Bluedragon]

Hi, has he had his methylmalonic acid and homocysteine checked? This should give an indication what is going on at a cellular level.

How is his ferritin/iron levels? Magnesium is also a good supplement to give, don’t use the oxide form.

I would also read Sally Pachlok’s book specifically for children and B12.

Difficult to say as child not in front of me but would probably look at bowel and gut functions.

Sounds like you are a caring and observant mum. 😊

[amandaabrams in reply to Bluedragon]

Thank you, I appreciate that. We had MMA checked last year but had already switched him to a nonvegetarian diet and given some supplements, so it came out OK. Didn't think of homocysteine, though--that's a good idea.

[jarlethblue]

You are a wonderful mum and seem to be on top of it. I am in the same boat.....never, ever took a B12 supplment, became very ill and my B12 reading was 1,200. no doctor had any explaination....I begans self injecting B12 last November and it has made a huge difference. I was losing the power in my legs among other things. It might be that your son and people like me have a functional deficiency where the B12 accumulates in the blood and cannot get into the cells. The solution is to keep our levels ultra high so that some trickles over. I suspect this is what you need to do with your son. But be aware that things can bet worse before they get better as B12 floods the system. I developed a range of symptoms that i did not gave prior to taking the B12 like depression and anxiety. I also increased my potassium and i take magnesium, probiotics, vitamin d and B1 B6 and Folinic acid. I suspect that he only absorbs a small amount of the tablets you are giving him. He cannot overdose on b12....it is water soluable and what is not needed is excreted out. healing hugs. J

[amandaabrams in reply to jarlethblue]

This is great and very useful--thank you. For now we'll continue with the high dose, but it does make me nervous...but I'm just naturally conservative like that. Thanks for your experience, and good luck to you!