Vit D

[StillHopeful]

Has any noticed that when they give their child vitamin D it causes behavior problems? My son seems worse with vit D. (1000 IU/day) He gets very short tempered and seems to have more anxiety. I am not 100% sure if this is the cause. Will be observing over the next few days. Any thoughts?

[smartyjones]

yes -- a number of years ago, i tried to give my ds vit d just in the thinking of increasing immune health and i believed i saw an uptick of troublesome behaviors. and i would always quit after a short time. this past summer, he tested quite low -- 20 something. we began a vitamin regime, but i left out the D because of prior trouble, i didn't want to add it with others. today, was first day. i waited until break from school just in case. we are starting very low and will increase gradually. we are starting with 200 ius.

 

our practice that works with vitamin regimes is surprised that i say i think i saw an increase in trouble from D b/c they think they usually don't -- but most of the people that they see with chronic trouble, test with low D.

 

i'd say try a lower dose and work up gradually.-- try a search on this forum -- there has been talk about it recently.

[philamom]

Yes, same with my daughter. I tried a few times and saw the same response each time. I'm getting ready to try again (day after Xmas) and will follow smarty's lead and start with 200 ius. Previously, I've tried 2000 & 1000 IU day.

[Hopeny]

I avoided vitamin D because I had heard it can exacerbate Lyme, then another post I read on this board around the relationship between depression and low D prompted me to try it. DD had low Vit D, 29 I believe with a normal range starting at 70. I saw a huge mood improvement, I even gave it to her when she was having a sad episode and 30 minutes later she was back to normal. I upped the dose from 400iu to 800iu, 5 days a week. DD's levels tested recently went up to 59. In our case it really seems to help but DD was low. DD is just shy of 9 and around 64 pounds.

[philamom]

I avoided vitamin D because I had heard it can exacerbate Lyme, then another post I read on this board around the relationship between depression and low D prompted me to try it. DD had low Vit D, 29 I believe with a normal range starting at 70. I saw a huge mood improvement, I even gave it to her when she was having a sad episode and 30 minutes later she was back to normal. I upped the dose from 400iu to 800iu, 5 days a week. DD's levels tested recently went up to 59. In our case it really seems to help but DD was low. DD is just shy of 9 and around 64 pounds.

I guess the different labs may have their own reference range. My dd11 just recently tested at 22, but normal range is 30-100. This was thru Quest.

[tpotter]

Has any noticed that when they give their child vitamin D it causes behavior problems? My son seems worse with vit D. (1000 IU/day) He gets very short tempered and seems to have more anxiety. I am not 100% sure if this is the cause. Will be observing over the next few days. Any thoughts?

 

 

Maybe herxing.

[MamaOnAMission]

same thing happened to my girl several times. this time i waited a long time until i stopped it, and now she seems to be tolerating it and it also seems to be helping. As for me...I had to go off it, because I was so sick and irritable. I was sooooo mean to my husband and could not get out of bed.

[MamaOnAMission]

same thing happened to my girl several times. this time i waited a long time until i stopped it, and now she seems to be tolerating it and it also seems to be helping. As for me...I had to go off it, because I was so sick and irritable. I was sooooo mean to my husband and could not get out of bed.

[smartyjones]

update on ds and vit D . . . during Christmas break, we started supplementing slowly, 200 iu. we stayed at each level for about 7 days. week of 200 iu, no apparent change. week of 400iu, no apparent change. a few days after going to 600iu, ds began some typically troublesome behaviors for him. . . big concern about fairness with brother -- it's an odd fairness in that he wants things to be exactly equal and the same for the two of them; more involvement in his own thoughts and himself -- read an entire book each day (not necessarily a bad thing, but in a closed off, introspective way); difficulty with homework, very hard to get started and avoidance of easy tasks.

 

you'd think i'd be smarter on this by now - but it clicked on day 6 that it could be the D. brought him down to 400iu. those behaviors abated in a few days. yesterday, he ran in from school to get right to homework -- of course, b/c it was a video day - but even that didn't matter last week. i guess i'll leave him at 400 for a while and then try to go up again.

 

he's up for blood tests again - i imagine D will still be low b/c i don't think we have been supp-ing long enough to make a difference.

 

does anyone recall -- i thought i'd seen somewhere from a conference that 'pandas docs' - not sure who -- said they like to see pandas kids with Vit D levels close to 50 --- ???

[ThinkGutBacteria]

Normally, vitamin D helps produce potent antimicrobial compounds, but some bacteria develop resistance. I found an interesting paper showing the paradoxical effect of vitamin D on streptococcus pyogenes (the bacterium responsible for strep throat). If that's the offending organism, it may explain why vitamin D helps in some cases but harms in others. See http://www.ncbi.nlm.nih.gov/pubmed/23093388

 

(Boston's Children's Hospital is an affiliated teaching hospital of Harvard Medical School.)

[StillHopeful]

That is interesting Think Gut! I was at my son's new DAN dr yesterday and he wants him to take D3, but when I said I thought my son reacts to it he dismissed it. M son is low so I think I will just watch him like Smarty did. At least we know we are not crazy!

 

Smarty, I don'tknow what the PANDAS docs want for an optimum level of D but my son was low and Dr. T didn't seem to care too much. The DAN doc wants me to give him 2000 IU per day which I think is too high so I will add D slowly.

[ThinkGutBacteria]

That is interesting Think Gut! I was at my son's new DAN dr yesterday and he wants him to take D3, but when I said I thought my son reacts to it he dismissed it. M son is low so I think I will just watch him like Smarty did. At least we know we are not crazy!

 

Smarty, I don'tknow what the PANDAS docs want for an optimum level of D but my son was low and Dr. T didn't seem to care too much. The DAN doc wants me to give him 2000 IU per day which I think is too high so I will add D slowly.

 

 

Shigella is another bacterium that has learned to turn off the antimicrobial peptide made by vitamin D. Interestingly, it can be overcome by butyrate (a fatty acid made by "probiotic" gut bacteria).

 

See http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108617/

[TOaksMom]

Has any noticed that when they give their child vitamin D it causes behavior problems? My son seems worse with vit D. (1000 IU/day) He gets very short tempered and seems to have more anxiety. I am not 100% sure if this is the cause. Will be observing over the next few days. Any thoughts?

 

 

The Marshall Protocol scientists believe that:

 

Molecular biology suggests that low levels of 25-D are a result rather than a cause of the autoimmune disease process and their research shows that in autoimmune disease, 25-D levels are naturally down-regulated in response to Vitamin D receptor dysregulation by chronic pathogens. Under such circumstances, supplementation with extra vitamin D is not only counterproductive but harmful, as it slows the ability of the immune system to deal with such bacteria.

http://autoimmunityresearch.org/transcripts/AR-Albert-VitD.pdf

http://www.sciencedaily.com/releases/2009/04/090408164415.htm

 

They also say that the Vitamin D that we supplement is also not a vitamin but it is a secosteroid which may depress inflammation but it is short term and is why you may initially feel better with supplementation but the suppression it does of the immune system is why our PANS kids may feel worse.

 

This Dr.’s site has a good condensed explanation of immune system dysfunction and what they are saying. So if someone has a TH1 inflammatory disease like PANS, then:

 

The vitamin D receptor on the cell membrane regulates the number of immune cells put into circulation. The number of immune cells is vital to the response of the immune system to invaders. The receptor is regulated by various forms of vitamin D.

 

• 1,25 di-hydroxy Vitamin D (1,25 D) is the form which turns the receptor on, thereby increasing the number of macrophages released. Vitamin D receptor activation causes an increase in the synthesis of antimicrobial peptides which can kill bacteria, viruses and other invaders immediately, in an "innate" or "cellular" immune response.

 

• 25-OH Vitamin D (25 D), the form that we commonly take as a supplement or eat in our food, is the form which turns the Vitamin D receptor off, thereby decreasing the number of macrophages released. It often works well, temporarily, if the condition is one of high inflammation. However, 25 D is converted to the 1,25 D form by the kidneys, and by sunlight acting on the 25 D form in the skin, which then turns the receptor back on, thus potentially resulting in increased inflammation in the final analysis.

 

So, is it bad to take a vitamin D supplement? Of course not – if you don't have sarcoidosis or other Th1 autoimmune inflammatory disease.

 

When we measure vitamin D levels, we generally measure 25 D and not 1,25 D because the latter is a more expensive test. If we see low 25 D levels, we think that the body does not have sufficient vitamin D. We may even supplement vitamin D. And it may help for a while, because 25 D turns off the vitamin D receptor, reducing the number of inflammatory macrophages. However, the system will continue to produce 1,25 D spontaneously (and in response to the higher 25 D levels), thus re-stimulating the inflammatory process which we were attempting to treat. If the level of 1,25-dihydroxy vitamin D in the blood is elevated (above 38-45pg/ml), or the 25-hydroxy vitamin-D depressed (below 20 ng/ml) then it is pretty certain that this process is in play.

 

This is the link to the above and at the end of the page this Dr. explains the Marshall Protocol so she supports it: http://www.arizonaadvancedmedicine.com/articles/immune_system_dysfunction.html

 

When my DD had a 25-D level of 19 test result and I first supplemented her with high dose vitamin D she did feel great and said that she "loved vitamin D" but that was short lived so I now tend to agree with not supplementing our immunodepressed kids and to keep that vitamin D receptor on.

[StillHopeful]

It can be very confusing and what works for one doesn't work for others. Right now we are using a dif vit supplement w D in it and new omega EPA and probiotics. I will conquer the vit D another day!

[MamaOnAMission]

The vitamin d3 helps mt girl with confusion and sleep but it does make her a bit nasty, but so does everything we try. Hopefully she will even out.. I am adding magnesium for constipation so perhaps magnesium might take the edge off.