Vitamin D - how fast could it work?

[Hopeny]

DD8 is Vitamin D deficient, has Lyme & Co, PANDAS, High Myco, MTHFR 677T and an immune defense deficiency. Since reading FCFXER post on Vitamin D and psych issues I started giving DD one kids chewable 400IU Vitamin D tablet ocassionally. I am working on getting her to an integrative to work on Methylation. Since she is about 75% improved from her worst time, and she is on full strength abx, it is hard to measure improvement however the Vitamin D did seem to be helping with her anxiety, obsessions and sadness etc. Today she (OMG)decided to open her window and sit on the sill while a playdate was over to cool down, the screen went crashing two stories and thankfully an angel held her from falling. Of course I had a long talk/yell with both of them, and DD started total meltdown hyperventilating etc. I finally calmed her down, when playdtae left she totally fell apart again, saying stuff like Life is pointless etc. After maybe 1.5 hours of this, knots in my stomach again, I decided WTH to give her a Vitamin D, and in 30 minutes a different (or should I say my original pre all this kid) came downstairs, laughing in a great mood the rest of the day/evening even talking about other parts of the playdate which was a very long one. It was like the past 4 hours hadn't even happened. Is there any possibility that this could have been the Vitamin D????? Or is she just continuing to get better? I have never really seen her recover like this before. How much D are people using? Should I start daily? It seems unbelievable that Vitamin D could be so powerful, could it be?

[kos_mom]

I guess I would be skeptical that Vitamin D could have that effect so fast. What I have noticed with my DD, 19, is that when she has had complete meltdowns she retires to her room and usually comes down a couple of hours later acting as though nothing had happened. I think she actually doesn't remember much if anything of the episodes. DD also has epilepsy and I liken this "forgettery" to what happens with seizures. It is very commone in epileptics that they do not remember 15 to 30 minutes before the seizure to a half hour or so after.

[Hopeny]

Thank you, in our case DD does not have epilepsy and she did not forget the incident, just the meltdown, hysterics and anxiety fully resolved in 30 minutes after taking the Vitamin. She talked about it today but like any regular kid, without overwhelming anxiety or obsessiveness. I will continue the Vitamin D and just will be hopeful that we have turned a corner and she is better able to manage. She refuses to take Motrin, perhaps Vitamin D has some anti inflammatory effect.

[StillHopeful]

Hi Hopeny -

 

According to my research Vit D is an anti-inflammatory. Not sure how fast it works though. Is it regular D or D3?

Edited October 22, 2012 by Ngold24

[StillHopeful]

Hi Hopeny -

 

I reread your post and see that you are giving 400IU of D. Thanks

[NancyD]

Vitamin D may have some anti-inflammatory and immune-modulating properties. Some studies have pointed to this, although I don't know if there is conclusive evidence. I'm not sure how much 400 IUs would help as that is extremely low dose. Have you checked levels? Be sure to give D3.

[nicklemama]

I suppose it could work. My DS takes 2000IU's daily and has been for several years. It doesn't stop flares for him nor make any improvements that I can speak of.

[Hopeny]

I totally agree its hard to know what is helping the progress, multi vitamins seemed to make DD worse so I had her off all supplements. She was slightly low on Vitamin D, tested in March when things were really tanking, her level was 27 on a range of 30-100. I just recently started giving her one chewable kids tablet of D3, after reading a link about Vitamain D and psych stuff, every few days. She has definitely gotten to a better place mentally since we started but that could also be other things too. I am really curious to see how much progress she will make when we start working on methylation for her single copy 677T mutation, I haven;t been focused on it because she has only one copy however even 30% impairement i am thinking could be a big difference for her . I also just bought some Vitamin D for myself to see if I feel any different on it.

[NancyD]

I find my DD is much healthier and has far fewer neurological issues if her levels are above 60. She takes 10,000 IUs per day.

[smartyjones]

I find my DD is much healthier and has far fewer neurological issues if her levels are above 60. She takes 10,000 IUs per day.

 

 

WOW -- 10,000!! what were her levels when you first had them checked? do you do other treatments/supplements or do you find the most benefit from vit D? did you see a benefit right away?

[NancyD]

Two years ago, when she was having one exacerbation after another, her levels were catastrophically low at 4. It has taken a long time to get them up over 60. At that time we also discovered DD had Lyme, Bartonella, and homozygous c677t MTHFR in addition to PANDAS.

 

We stopped doing IVIg and added two more abx (rotating different abx over two years). She is on many different supplements to support her organs and immune system and aid in detoxification (C, D3, E, Bs, omega 3, milk thistle, NAC, Querciplex, transfer factor Tri-factor, transfer factor LymPlus, alpha Lipoic acid, curcumin, adrenal essence, L-Carnitine, Theralac, melatonin, magnesium Glycinate, zinc Picolinate, L-methylfolate, B12 nasal spray). And now she is down to only 2 abx (Augmentin XR and Axith) and an anti-fungal, amphotericin B.

 

I would say high doses of D3 is one of the more important things we have done, in addition to treating the other underlying infections with abx and reducing the inflammation. Prior to that we could not keep DD in remission for more than a year (and we were thrilled with that). Now, her PANDAS has been in remission for 2 1/2 years.

 

The only remaining symptom left is anxiety/OCD, which has been impossible to eradicate. I think it is due to either Bartonella or MTHFR and we still have a few treatments left to try.

 

In answer to your question, no, we did not see a benefit right away from D. It was a slow process. Plus, DD had a LOT of inflammation.

 

I too had low levels of D (in the 20s) and started taking 5000 IUs D3 two years ago. That is when I also discovered that I had Lyme and Bartonella as well and began treatments. I have been off all abx for 6 months now and am feeling great. I still take 5000 IUs D3 plus other supplements to support my immune system and organs. My D levels are also ~65.

 

I find my DD is much healthier and has far fewer neurological issues if her levels are above 60. She takes 10,000 IUs per day.

 

 

WOW -- 10,000!! what were her levels when you first had them checked? do you do other treatments/supplements or do you find the most benefit from vit D? did you see a benefit right away?

Edited September 18, 2012 by NancyD

[tpotter]

I would never say it couldn't happen, because in my experience, we had the same thing happen with 1 of my children with peanuts/peanutbutter (happened within, literally 3 - 5 minutes), and azithromycin with the other (within 1 - 2 hours.) We figured out that the peanuts/peanutbutter is full of tryptophan and oil and is also extremely low on the glycemic index (I suspect it could be all 3, and it only took 1- 2 T of peanutbutter or a very small handful or 2 of peanuts to stop a rage in it's tracks.) The azith stopped my other son's depression and suicidal ideations within 1 - 2 hours (and both things were tested repeatedly on my children.) I did not expect either of these things to happen, and the peanuts took me more than a year to figure out why it was probably working.

 

So, the fact that you had this happen with Vit. D., although I can't explain it, wouldn't surprise me.

 

And, yes, Vitamin D is very important for all our kids. At the highest, I was taking 50K IU for a week. My children and I are regularly taking 2 - 4K IU (my children are 16 and 19, but I would definitely keep an eye on that vitamin D, because I keep hearing that so many of our kids have low vitamin D.

Edited September 18, 2012 by tpotter

[NancyD]

I would also like to add -- for those who have difficulty taking D3 -- it can cause a herx-like reaction. It did with my daughter every time I tried to give it to her. We just had to work our way through it. Ibuprofen helped.

 

Two years ago, when she was having one exacerbation after another, her levels were catastrophically low at 4. It has taken a long time to get them up over 60. At that time we also discovered DD had Lyme, Bartonella, and homozygous c677t MTHFR in addition to PANDAS.

 

We stopped doing IVIg and added two more abx (rotating different abx over two years). She is on many different supplements to support her organs and immune system and aid in detoxification (C, D3, E, Bs, omega 3, milk thistle, NAC, Querciplex, transfer factor Tri-factor, transfer factor LymPlus, alpha Lipoic acid, curcumin, adrenal essence, L-Carnitine, Theralac, melatonin, magnesium Glycinate, zinc Picolinate, L-methylfolate, B12 nasal spray). And now she is down to only 2 abx (Augmentin XR and Axith) and an anti-fungal, amphotericin B.

 

I would say high doses of D3 is one of the more important things we have done, in addition to treating the other underlying infections with abx and reducing the inflammation. Prior to that we could not keep DD in remission for more than a year (and we were thrilled with that). Now, her PANDAS has been in remission for 2 1/2 years.

 

The only remaining symptom left is anxiety/OCD, which has been impossible to eradicate. I think it is due to either Bartonella or MTHFR and we still have a few treatments left to try.

 

In answer to your question, no, we did not see a benefit right away from D. It was a slow process. Plus, DD had a LOT of inflammation.

 

I too had low levels of D (in the 20s) and started taking 5000 IUs D3 two years ago. That is when I also discovered that I had Lyme and Bartonella as well and began treatments. I have been off all abx for 6 months now and am feeling great. I still take 5000 IUs D3 plus other supplements to support my immune system and organs. My D levels are also ~65.

 

I find my DD is much healthier and has far fewer neurological issues if her levels are above 60. She takes 10,000 IUs per day.

 

 

WOW -- 10,000!! what were her levels when you first had them checked? do you do other treatments/supplements or do you find the most benefit from vit D? did you see a benefit right away?

[CarLy]

I would also like to add -- for those who have difficulty taking D3 -- it can cause a herx-like reaction. It did with my daughter every time I tried to give it to her. We just had to work our way through it. Ibuprofen helped.

 

Two years ago, when she was having one exacerbation after another, her levels were catastrophically low at 4. It has taken a long time to get them up over 60. At that time we also discovered DD had Lyme, Bartonella, and homozygous c677t MTHFR in addition to PANDAS.

 

We stopped doing IVIg and added two more abx (rotating different abx over two years). She is on many different supplements to support her organs and immune system and aid in detoxification (C, D3, E, Bs, omega 3, milk thistle, NAC, Querciplex, transfer factor Tri-factor, transfer factor LymPlus, alpha Lipoic acid, curcumin, adrenal essence, L-Carnitine, Theralac, melatonin, magnesium Glycinate, zinc Picolinate, L-methylfolate, B12 nasal spray). And now she is down to only 2 abx (Augmentin XR and Axith) and an anti-fungal, amphotericin B.

 

I would say high doses of D3 is one of the more important things we have done, in addition to treating the other underlying infections with abx and reducing the inflammation. Prior to that we could not keep DD in remission for more than a year (and we were thrilled with that). Now, her PANDAS has been in remission for 2 1/2 years.

 

The only remaining symptom left is anxiety/OCD, which has been impossible to eradicate. I think it is due to either Bartonella or MTHFR and we still have a few treatments left to try.

 

In answer to your question, no, we did not see a benefit right away from D. It was a slow process. Plus, DD had a LOT of inflammation.

 

I too had low levels of D (in the 20s) and started taking 5000 IUs D3 two years ago. That is when I also discovered that I had Lyme and Bartonella as well and began treatments. I have been off all abx for 6 months now and am feeling great. I still take 5000 IUs D3 plus other supplements to support my immune system and organs. My D levels are also ~65.

 

I find my DD is much healthier and has far fewer neurological issues if her levels are above 60. She takes 10,000 IUs per day.

 

 

WOW -- 10,000!! what were her levels when you first had them checked? do you do other treatments/supplements or do you find the most benefit from vit D? did you see a benefit right away?

[CarLy]

We were told by a Ped. who treats PANDAS kids locally that we should be giving our DD 2,000iu Vitamin D3 daily. We were only giving her 400iu at the time. If the vitamin d is working for your DD, I say keep on doing what works.