vitamin D

[smartyjones]

i know vitamin D seems to be a 'hot' health topic -- what does anyone know about it in specific relation to pandas kids?

 

 

huge thanks to vickie for the info posted on pandasnetwork.org from the OCDF convention!!! i believe i read in that that one doc says our kids levels need to be 50? is that correct?

 

all i read says you get it from sunshine. my 8 yo has been homeschooled the past 2 years so i'd have to say he gets at least as much sunshine, if not more, than the average kid his age. his level just came back as 20. how is this possible? i'm really missing how you have a vitamin D deficiency.

 

in the past, when i've tried to supplement him, just in thoughts of good health, i've thought i've seen activation of symptoms. of course, i'll discuss with our doc -- but just hoping to get info from the wise members here. thanks!

[EAMom]

his level just came back as 20. how is this possible? i'm really missing how you have a vitamin D deficiency.

 

 

It's entirely possible!

 

Where do you live?

 

We live in N.Ca...dh's level was 16.

 

My PANDAS dd's level was 29. This is a kid who was outside every day from 1:45 until 3:15 in short sleeve shirt and shorts (PE and then walking home). (cut off for normal for our lab is 30)

 

I was "normal" at 31...I am outside (usually walking the dog 12-1, plus gardening) every day. I was also getting about 800-1000 iu via supps, and I drink milk.

 

This is a good book on the topic. http://www.amazon.com/Power-Vitamin-Comprehensive-Information-Deficiency/dp/1432748106/ref=pd_sim_b_2

 

Also, the vitamin D council has lots of info.

http://www.vitamindcouncil.org/

 

When I asked to be tested, the doc who ordered the test says about 75% of the people he tests are low.

Edited August 5, 2012 by EAMom

[trggirl]

All I can add is that my daughter is low also and is definitely activated by Vitamin D.

[LNN]

I posted this link on another response but wanted to make sure you see it:

https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=175

 

Vitamin D metabolism dysregulation is thought to be a mechanism that intracellular bacteria use to hide from the immune system and defeat the action of antibiotics alone, allowing them to multiply safely sequestered within the cells. Vitamin D Receptors are blocked by bacterial proteins causing the inflamed tissues to produce an excess of the secosteroid 1,25-dihydroxyvitamin-D in an attempt to activate Vitamin D Receptor (VDR) transcription. The blocked VDR allows the bacteria to colonize the phagocytes, avoiding the lysosomal phagocytosis.

It's well worth reading the entire article - lots of "aha" moments for me. But it seems certain bacteria can interrupt your Vitamin D synthesis. Supplementing D would boost your immune system and perhaps allow it to kill more bacteria, resulting in a herx-like response.

[lfran]

EVERY time we try to add Vit D supplements (D2, D3, dry D3) my son has an increase in tics. We've tried about 5 or 6 times now, 'cause the docs are always worried about his relatively low (low 20's) Vit D levels.

 

All I can add is that my daughter is low also and is definitely activated by Vitamin D.

[dcmom]

smarty-

 

two pandas kids as you know- very similar course of illness-

 

one has low vit D, one does not.

 

Hhhmmm. Makes me think there is no connection. One with low Vit D is definitely the kid I would term as healthier (physique, diet, muscle tone, appearance, etc). I do supplement her- make no difference that we experience.

[MomWithOCDSon]

Not really pertinent to our kids, but given the timeliness of the topic, I thought I'd add what I was told today via my first ever visit to a dermatologist.

 

I had a couple of moles I wanted looked at . . . so much paranoia these days about skin cancer, and they were a little oddly shaped, etc. Anyway, turns out they're just more of your basic, non-cancerous aging skin.

 

But in looking at my chart and my full disclosure of all the supplements I take, the doctor noticed D3 on the list and asked how much I take. I told her currently 1,000 mg./day. She said that "over 40" our bodies for some reason stop making it effectively, even when we're getting regular sun exposure. She recommends supplementation at about 4,000 mg./day!

 

I've never been tested, but if what she's saying is true, I'd lay odds my levels are low. Time to up my game!

[smartyjones]

thanks for all the thoughts!!

 

wow mom -- 4,000. i'll pass on to my mom b/c she tests low and none of her docs seem that concerned -- they just kind of brush it off that sure, she can take D if she thinks she should. she hasn't gotten much recommnedation or concern other than to sit in the sun it's kind of odd. our docs were recommending 500 mg 2x/day for ds and he's about 55 lbs.

 

not sure what to think about it as we are embarking on a new phase of our treatment -- i think we've got the infections under control -- we are now working to correct imbalances that either allowed or developed from those multiple infections -- specifically, low zinc and thus zinc/copper imbalance. since D was also low, docs were planning to supplement but b/c i discussed that we've possibly had a problem in the past, we've put that on the back burner until we begin the others. once we get set with that, we'll try to add D.

 

 

thanks LLM for the links. not sure what to think about that in ds's case-- it definitley makes the most sense to me that infection would be the plausible reason b/c other than that, he shouldn't have a D deficiency -- of course, can also make me spin off b/c like i said, we really think we have infections under control, unless it could be result of past infection and not built back up yet --- ARRGG -- i think i'm going to put the fear of current stealth bacteria also on the back burner until we add the D and see what happens then. i could spend the whole day in circles if i let myself -- actually i think the only thing that stops me is my brain gets exhausted.

[philamom]

My daughter and I are always low. I recently saw a functional medicine doctor who recommended 5,000 IU daily. She suggested I take a 50,000 IU capsule of D3 once a week for 6 weeks and then retest.

 

I tried 2000 IU drops and 1000 IU capsules on my daughter and noticed a reaction. I'm going to try a lower amount.

Edited August 6, 2012 by philamom

[EAMom]

 

wow mom -- 4,000. i'll pass on to my mom b/c she tests low and none of her docs seem that concerned -- they just kind of brush it off that sure, she can take D if she thinks she should.

 

that's 1 step up from my father's doc (I call him a doc in the box). He refuses to even test my father's vitamin d level. My dad is 96.