Vitamin D - What was your experience?

[riffleshell]

Searching through the archives of the forum, it seems that many, many of you have reported that Vitamin D causes issues/backsliding for your kids.

 

Tell me about your experiences:

• Did anyone stick with it and eventually see a good result?
• Did ramping up the dosage slowly help?
• Did anyone have a good experience from the get-go?
• Was there a combination of vitamins that worked to mellow the crazy?
• Did you find another way to get your child's levels up?

Backstory: My kid came down with PANDAS in October of 2013 and is mostly recovering. (I wrote about his story a bit here.) We recently added Vayarin to his regimen of fish oil, 5HTP, vitamin c and probiotics. Adding Vayarin seemed to make a HUGE difference. The past two weeks or so have been really great--normal, even.

 

His doctor recently tested his vitamin D levels and said they were low. (28 on a scale of 33-100, but many folks will say you are really shooting for around 50.)

 

He recommended we supplement with 1,000 IU a day but...oh my. This has certainly put an end to the recent good run we were having. Thoughts how on I can up his Vitamin D levels without ruining our family's quality of life?

 

[dcmom]

My daughter also had low Vit D. She takes 500/day.

 

I don't believe there is a correlation, but in the 3 years she has been taking it: very little illness, NO PANDAS.

 

She takes it in the AM with food.

[NancyD]

Over the years we had great difficulty putting my DD on D3 at any dose. We tried multiple carriers and different dosage. Regardless, it caused severe mood dysregulation and rages. In 2010 her levels dropped to low single digits and I had no other choice as she was getting one infection after another. We put her on 10,000 IUs per day. It took a couple years for her levels to increase to 65 but it was a rough few years. She was still doing poorly (re anxiety, OCD, and mood dysregulation). In Oct our ART MD tested D3 and it tested negative - meaning her body did not react well to it. We took her off it for 2 mos and her moods were much better but her levels dropped to 40. We tried putting her on 5000 IUs per day for a few days and the rages were so bad we had to pull her off it. She is now off D3 and doing much better from a mood standpoint. DD has Lyme/Bart/Babesia/PANDAS. We may have to use light therapy if her levels get too low again.

[nicklemama]

My son takes 2000IU a day of vit D and has for many years. He takes Rainbow Kids gummies, 1000IU per gummy. Even with that amount I think his last D3 was 50. I've read of issues with vit D supplementation but we've not seen it.

[philamom]

Like Nancy D, my daughter reacts very poorly to vit d - even after one capsule. I've tried numerous dosage and brands at different times, with no success. In our case, it causes really bad mood regulation like mentioned. This was on the lowest dose I could find. My dd has lyme/bart/pandas.

 

Suggestion- maybe take him off and wait till he is back to previous baseline, then start with a very low dose (200iu) every 3rd or 4th day and see if there is a reaction.

[PIK]

Is there a correlation between PANDAS/strep and low vitamin D levels? I had VERY low levels of vitamin D. It was 9 and the lower limits of normal was 35. I'm an adult male. In any case, he put me on 50,000 units for about six months, and now I'm on 2000 units per day. It's up now to about 32. I felt achiness and fatigue when the vitamin D was low. I haven't noticed any psych issues with the vitamin D therapy at all. Then again, it might be different for children. I'm curious to know of any correlation between strep and low vitamin D levels.

[riffleshell]

Nancy or LLM or one of the others on the boards probably understand this all way better than I do but here are a couple of interesting--and seemingly contradictory--links.

 

Vitamin D Deficiency Linked to Autoimmune Diseases

and

Vitamin D may exacerbate autoimmune disease

 

There's been discussion on the boards previously about genetic markers and such as well.

 

My bottom-line question is: For anyone that started out having a rough time on Vitamin D, did sticking with it (or ramping up slowly) ultimately benefit you/your child?

Edited February 21, 2014 by riffleshell

[Rachel]

My son takes 5,000 of D3. He just had his levels checked and they have dropped down to 43. He was at 60 but does not get any sun at all. My son's moods are better when he is at a higher level. Our doctor has told us to bump him up to 10,000 until summer or until we can start getting him out into the sunshine for a stroll in his wheelchair.

 

I have also read that there is a connection between Myco P and vitamin D. Vitamin D is supposedly helpful in fighting this virus according to Garth Nicholson.

[3bmom]

A timely question for me! My DS vitamin D levels also are very low despite hours of outdoor activity in the California sun. I have learned that the chemicals in Round Up that is being sprayed on our food at high levels never done or tested before acts as a chelator of minerals, especially magnesium so it is difficult for our bodies to uptake Vitamin D.

 

I haven't read yet, but will the above posts on autoimmune and Vitamin D because somewhere in all my research I think I read where some viruses utilize Vitamin D for food. That may explain why some have increases in exacerbations.

 

Was going to order some today and have been procrastinating for months. Would love to know if it goes back to your individual genetics.

[3bmom]

Riffleshell, Thank you for the great info!!!! Looks like catch 22. Maybe it is similarthe mistake they are just learning about high cholesterol. The cholesterol is like a fire fighter being blamed for starting a fire because they are always present at fires. I am sure it goes back to your individual tapestry.

 

My girlfriend has just battled both breast cancer and rectal cancer with no genetic markers but she does have very high Vitamin D.

[MaryAW]

My DD had very low D, as did both my husband and I. She took 3000 IUs and did get up to a measure of 70. She had no negatives along the way. We have her on 2000 IUs now for maintenance. I cannot tell you the amazing difference it has made in her PANS and life in general. It was huge for helping with sleep, even things like her balance and coordination got better. All of us are so much healthier now too. It is a big help for the immune system, no question. I did read a few places to give the D with the largest meal of the day, and I always give it to her with milk. I also give her no other meds or supplements within 2 hours of the D because I feel it is the most important thing I give to her (followed closely by her omega 3's).

 

I did read both articles, and I'm going to say that they may both be correct because there are probably two different reasons for autoimmune disorders. I think that my daughter's issues and other PANS/PANDAS children may have been caused by low vitamin D level during pregnancy and breastfeeding, and then the use of sunblock and sun avoidance. However, there is probably a different group of PANS/PANDAS children who fall into the category represented by the 2nd link whereas they may not metabolize D properly. In the former group, supplementation would help, whereas in the latter group it might not.

 

Just curious if those with children who have a bad reaction to D3 supplements have tried sun exposure. Remember that the sun does not produce UVB rays (which are what our skin uses to make D) in the winter north of a certain latitude.

[DsMom]

My DS13 labs for vit D were at 14 in December....awful. But I have been unsuccessful with virtually any amount of D suplement; he gets more angry, anxieties amp, tics amp, etc. very shortly after he takes any.

We have a summer place in the desert and although he spent little time in the sun w/ out mega sun block on (minocycline last summer, makes the skin super sensi to burning) I didn't notice he was any worse whatsoever after time outside...in fact I've been noodling about some type of lamp that he might get some Vit D from, but I haven't gone there yet.

Omega 3s also trigger really intense upticks in his pandas symptoms, at least they did last year, so we steer clear of those too.

The almond milk, protein shakes and some other foods he eats that have vit D in them don't seem to affect him adversely but even 200 mg of a vit d supp will.

hopefully your DS can tolerate a small dose of D. I would get some 200 mg, half them and start there...ramp up slowly if he can do it until you find the tipping point. Good luck!

[ktdommer]

Three in my family vitamin D deficient. Doc says due to Lyme and deregulation of the body. He measures our floating D3 and it is in the body but we are not using it as measured by the 25-D hydroxy testing. I think that's the name. Anyway, two measures of D. The important one is how much is being used. My sickest child takes 12,000 IUs daily.

Our prior doc said that once he sees normal D in his patients, he knows they are getting better.

I can't report any negative side effects. Only youngest with PANS.

[smartyjones]

riffleshell -- it seems like your positive reaction to vayarin was pretty immediate, is that correct? I had not heard of that before -- am thinking of trying phosphatidylserine supplement. but of course, I posted about it and then heard of PC -- yikes -- so many directions to go! I am mainly looking to it for fidgety issues.

 

ktdommer -- how do you measure floating vit D?

 

we have had terrible time trying to get vitamin D right. ds has not been tested in about a year - he was somewhere around 20 when he was. the first time he was tested, was summer -- he had been outside all spring and summer for good amounts of time. when he was younger, i was vigilant about sunscreen -- but had really backed off -- he had spent much time without it.

 

I found a 200iu that I was trying and going up slowly but even recently that proved troublesome. one of our docs said he didn't think ds should have over 400iu.

 

our other doc does a type of ART and said that particular supplement was troublesome for him. he suggested trying another supplement. this one didn't really have any other ingredients --I don't know -- perhaps vit D from fish is bad for ds -- ??? most of the supps are not that low in iu. I don't know what to do about it.

 

like you mention, our ds is doing pretty well -- so I am concerned but not willing to power through when I am not sure there will be a breakthrough. I wonder if ds has a vtaq genetic issue (?) but we haven't done 23 and me. I think there is some issue with vit D and serotonin/dopamine that causes the troublesome issues with supplementation. but that still leaves us with subpar levels. not sure what to do!!

[philamom]

Same here - like dsmom and smarty. We have been monitoring d levels for a few years, every 3 months. She ranges around 25 in winter months and borderline low normal in summer. When not on sun sensitivity medicine in summer, I relax on the sunscreen. I wait a bit before putting it on. Never see any adverse to reaction to sun - just all vit d products. I'm going to try and push through this summer - starting with once a week (200 iu) and seeing if I can move forward. My child reacts after one capsule. Someone mentioned taking it with vit k. Maybe we'll see if that makes a difference. LLMD feels it vital for improving.