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B Complex vitamins


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15 replies to this topic

#1 cdnmom

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Posted 08 August 2012 - 01:39 PM

Can Vitamin B Complex aggravate tic symptoms? Started my ds8 on them yesterday morning and by this evening his tics have been acting up. He was on double the adult dose as per his BIE practioner. She said the body will deplete what it does not need. I've tried searching the forum but came up short.


#2 nancyd

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Posted 08 August 2012 - 01:48 PM

I have NEVER been able to give my DD B complex. I have to break down the Bs and give them to her individually. I suspect the problem is with inositol, which she has never been able to take, or the folic acid, which I now know she cannot convert (she is homozygous 677 MTHFR).

#3 momwithocdson

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Posted 08 August 2012 - 02:01 PM

If you search for some of the individual "B's" (B6, B12, etc.), you'll find some topic threads here about those. I'm less familiar with tics generally speaking, but we've had discussions here about methylation issues among our PANDAS/PANs kids (MTHFR mutations, etc.), and the impact B12 and/or B6, in particular, can have on our kids' behaviors.

Like NancyD, we finally had to knock off the B-Complex and focus on dosing B6 individually, basically no supplementation (beyond diet) of the other B's at all. Many families move to dosing methylfolate instead of the standard forms of B vitamins because the methylated form of the vitamin is better/more efficiently utilized by the kids' bodies than standard forms (at least that's what I've taken from the discussions, but I'm no expert on methylation).

You could run a forum search for that term (methylation), too, and certainly find some additional information that might strike a chord for you.

Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#4 cdnmom

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Posted 08 August 2012 - 02:24 PM

Yes, I recall reading the issues with methylation among pandas children....just information overload on my part. I'm still new to all of this and try to remember as much as possible. I searched the forum on vitamin B's but did not get much. I will try methylation. I have had a phone consult with Dr. T. who sent me a panel of 16 blood tests but the MTHFR gene mutation was not among them. I'm assuming it is not on the initial "basic screening" tests that he does? Maybe it's worth testing, seeing as my ds is reacting to the B Complex. His multi also contains B6, B12, inositol, and folic acid....now I'm wondering if I should take him off of this too?

#5 llm

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Posted 08 August 2012 - 02:32 PM

The convenience of a B complex is tempting. But we've chosen to do individual Bs. Due to a similar but less severe MTHFR mutation as NancyD, my DD needs a special/methyl form of B9 (methylfolate) but B3 (niacin) needs to be restricted because it counteracts some of the benefits of Methylfolate (for her, not necessarily for everyone). From the site mthfr.net:

Nicotinic acid (Niacin USP) requires SAMe to be metabolized. SAMe is a major methyl donor. Thus, when one consumes niacin, SAMe gets used up and methyl donors drop. Thereby excessive methylation goes away.

My daughter is an undermethylator, so anything that's good for overmethylators is "bad" for her. She generally needs to avoid excess niacin (unless she gets too much methylfolate - a personal experience I'll post about in the coming days)


The site goes on to explain
Nicotinic acid is a cofactor for the COMT enzyme. This enzyme helps breakdown norepinephrine and epinephrine and estrogen. These are all commonly elevated in those with anxiety. Since the COMT enzyme sped up, the breakdown of these occurred faster.

Now, my DD has anxiety, but I'm not sure about the status of her COMT gene (can't find a lab to test it - anyone have ideas beyond Yasko?). Lots of things can cause anxiety. So I don't want to be breaking down neurotransmitters faster than planned just because it's more convenient to take one B complex instead of select Bs based on her individual needs.

Not sure about tics, other than to say that when my son couldn't get rid of toxins quickly enough, he ticced. If the B complex has helped revitalize something in the body, the increase in tics could be a temporary response to the body waking up again and re-starting processes that had been lagging before. So you may have ended up giving him something he really needed, but maybe in too high a starting dose. But as a complex, it's hard to speculate on which B was behind the response. Another reason I stay away from the complex. I want to be able to tailor doses and only use the Bs that seem to be needed for each kid.

#6 cdnmom

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Posted 08 August 2012 - 03:05 PM

Wow, well if I didn't already have info overload......how do you folks know all this? I am so grateful for you people. I have to go back and re-read every sentence 10 times just to get the jist of it....lol. Anyhow, what type of doc/specialist deal with MTHFR mutation? Does Dr. T. or B. test for this mutation? I'm afraid to give ds the B's now that I know it is aggravating his tics, but his BIE practioner says his body is lacking (she knows nothing about Pandas though). So, I can buy the B's separately and try one at a time to see how he reacts to each one individually? The MTHFR test itself sounds complicated.

#7 nancyd

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Posted 08 August 2012 - 03:27 PM

Ash,

Any doctor -- even your pedi -- can order a MTHFR DNA test. As far as who to treat, typically these are integrative doctors or DAN doctors who understand how to treat MTHFR mutations.

Nancy

P.S. The test is not complicated. It's a simple blood test.

Edited by NancyD, 08 August 2012 - 03:28 PM.


#8 kiera

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Posted 08 August 2012 - 04:10 PM

The convenience of a B complex is tempting. But we've chosen to do individual Bs. Due to a similar but less severe MTHFR mutation as NancyD, my DD needs a special/methyl form of B9 (methylfolate) but B3 (niacin) needs to be restricted because it counteracts some of the benefits of Methylfolate (for her, not necessarily for everyone). From the site mthfr.net:

Nicotinic acid (Niacin USP) requires SAMe to be metabolized. SAMe is a major methyl donor. Thus, when one consumes niacin, SAMe gets used up and methyl donors drop. Thereby excessive methylation goes away.

My daughter is an undermethylator, so anything that's good for overmethylators is "bad" for her. She generally needs to avoid excess niacin (unless she gets too much methylfolate - a personal experience I'll post about in the coming days)


The site goes on to explain
Nicotinic acid is a cofactor for the COMT enzyme. This enzyme helps breakdown norepinephrine and epinephrine and estrogen. These are all commonly elevated in those with anxiety. Since the COMT enzyme sped up, the breakdown of these occurred faster.

Now, my DD has anxiety, but I'm not sure about the status of her COMT gene (can't find a lab to test it - anyone have ideas beyond Yasko?). Lots of things can cause anxiety. So I don't want to be breaking down neurotransmitters faster than planned just because it's more convenient to take one B complex instead of select Bs based on her individual needs.

Not sure about tics, other than to say that when my son couldn't get rid of toxins quickly enough, he ticced. If the B complex has helped revitalize something in the body, the increase in tics could be a temporary response to the body waking up again and re-starting processes that had been lagging before. So you may have ended up giving him something he really needed, but maybe in too high a starting dose. But as a complex, it's hard to speculate on which B was behind the response. Another reason I stay away from the complex. I want to be able to tailor doses and only use the Bs that seem to be needed for each kid.

LLm, I sent you a PM, Kiera.

#9 smartyjones

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Posted 08 August 2012 - 05:35 PM

So, I can buy the B's separately and try one at a time to see how he reacts to each one individually? .



to me. this likely sounds your best bet as to how to deal with this problem. i was going to try inositol for my ds b/c i had read much good about it. we see an integrative MD who does a type of energy testing. he said he thought this was troublesome for ds. now, this was a product i brought in to him, not a pure compound so could have been somehow something else -- but this doc has been right about a lot of things, so i stay away from inositol for ds.


my ds was neg for MTHFR, but as i was researching, etc -- and i certainly get very confused with the whole methylation issue -- i believe i read there can be an issue for some people who have methylation issues with inositol. to me, it seems to be one of those things that is great for some people, but troublesome for others.

#10 llm

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Posted 09 August 2012 - 03:14 AM

Not sure what a BIE is, but you might want to let him/her know about your son's reaction and ask about trying the Bs one at a time. Since he/she knows your son's symptoms and feels something is deficient, ask which of the Bs you should start with first and at what dose.

If they don't have specific recommendations, I'd start with B6 - but a specific form of B6 called P-5-P or something that has a a blend of this and other forms of B6. B6 is a co-factor to a lot of activities that influence neurotransmitter synthesis and the immune system as well as the detox system. When I checked Amazon, the lowest dose I could find was 50mg. Not sure how much your son weighs, but I'd start lower than this and build up. Maybe half a capsule/tablet or even less. When I do a trial, I start at the lowest dose for about 5-7 days, then increase the dose and stay at that for another 5 days and then go from there. I try not to change anything else during that time.

Many people supplement with B12. From everything I've been told, this vitamin is very poorly absorbed as an oral supplement. Something like only 1% gets absorbed and thru the stomach acids. So I would not waste money on a B12 trial. If your doctor feels this is really important to add, get either a sublingual supplement that dissolves under the tongue or discuss B-12 shots. B-12 is needed for energy. It would be something to consider if fatigue is a big symptom, but otherwise it would be lower on my list of things to add.

Inositol (formerly called B8) was good for my son's anxiety but it was at significant doses (5grams) and he has no methylation issues. It was mildly helpful for my daughter at 2.5 grams (she does have a methylation challenge) but large amounts generally aren't needed unless anxiety is a big symptom and even then, other supplements can be equally or more helpful. Given the hit-or-miss response that Smarty refers to, it wouldn't be one of the first B's I'd experiment with.

As for the other B's, I'd research each one (not relying on a single source because most sites aren't very thorough) and hit the ones that strike a chord. Always try to find out if there's an activated form of the B - for example, methylfolate is the active form of folate. Methylcobalmin is the activated form of cobalmin (B12). Niacinamide or nicotinic acid is the active form of niacin. P-5-P is the active form of B6. Whenever possible, buy the activated form, as some people may have problems converting a vitamin into it's activated form (this is the jist of why MTHFR is important for some - the MTHFR mutation sometimes prevents the body from converting folate into the active form called methylfolate, so you need to supplement with the active form, which bypasses this defect and gives the body what it can't make on its own).

Always start with a low dose. Sometimes a bad reaction isn't due to the supplement itself but rather too high a dose or too high a starting dose. When someone hasn't had water for 3 days, you can't give them a gallon to drink. You need to start with sips. Giving a gallon of water to start with would kill them. The deficient body needs time to adjust and re-start systems that have been shut down.

But please don't rely on my limited knowledge. Please check with your doctor first.

#11 cdnmom

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Posted 09 August 2012 - 05:57 AM

BIE is the acronym for Bioelectric Intolerance Elimination. It is similar to N.A.E.T. whereby, using biofeedback analysis can determine sensitivities or intolerances. The practioner uses direct energy onto various points on the body to help decrease allergy symptoms and sensitivities and create homeostasis (body equilibium). The difference, I believe, between NAET and BIE is that BIE can target 4 - 6 sensitivities at one time, whereas NAET targets 1 at a time....but this is another topic altogether. My BIE practitioner is not a doctor, she is a holistic nutritionist and BIE practioner who healed her daughter of TS, but she has very limited knowledge of Pandas.

My mistake was not talking to my DAN doc before starting ds on the B Complex. Although my DAN is very knowledgeable, I don't think he has a great deal of experience with Pandas kids.....I can't find anyone who has(Canada). You folks, in my opinion, know much more than the docs up this way with regards to Pandas and the magnitude of this disease. I print off your information to take with me to the docs all the time. Thanks for your help, I will talk to my DAN before doing anything.

DS needs blood drawn for Dr. T....I will request the MTHFR DNA also be done (cant hurt), that is if they even test for that in Canada. My ds's immunologist had never heard of it. My DAN doc has heard of it but responded with "I keep wanting to look into that"; based on that statement, I believe he has limited knowledge about it.

#12 cdnmom

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Posted 11 August 2012 - 04:03 PM

For those of you whose children can't tolerate vitamin B's, what multi vitamin, if any, do you give them?

#13 nancyd

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Posted 11 August 2012 - 06:32 PM

For my DD I have to break out every vitamin and supplement individually since she is sensitive to too many things.

#14 llm

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Posted 12 August 2012 - 06:41 AM

I would love to find a multi that met our needs. Unfortunately, I can't find one. So we too use individual supplements for the stuff that's most critical. Once or twice a week, I'll give the kids a multi in a feeble attempt to compensate for poor diets. But not on a regular basis. This one is under consideration http://www.seekinghe...n-for-kids.html but it's pricey, you need to take 4/day (I'm trying to reduce, not increase the number of pills) and I'm not crazy about some of the doses of things.

#15 trggirl

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Posted 12 August 2012 - 07:23 AM

LLM, looking forward to hearing about your experience with the Niacin when you have time. Thanks!




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