anyone using high dose vitamin D? check out this case

Discuss autism diets and biomedical treatments of autism.

Moderator: ModeratorBill

dabaxter
Posts: 4052
Joined: Wed Nov 14, 2007 12:50 pm

Re: anyone using high dose vitamin D? check out this case

Postby dabaxter » Sat Sep 15, 2012 9:14 am

Looking at some notes, I saw where McCandless recommended 10,000IU for 3 weeks, then 5000iu indefinitely.
$5 off iherb.com. Use:REW815/$5 off pureformulas.com Use:RJNXCX

dabaxter
Posts: 4052
Joined: Wed Nov 14, 2007 12:50 pm

Re: anyone using high dose vitamin D? check out this case

Postby dabaxter » Sat Sep 15, 2012 9:17 am

http://www.vitamindcouncil.org/news-arc ... vitamin-d/

The second reason for a poor response in autism is dose. Autistic children need aggressive doses of vitamin D, not maintenance doses. Think of it like treating rickets. My advice is to give enough vitamin D to get him to at least a 100 ng/mL (250 nmol/L) and if that does not work increase the dose until his 25(OH)D level is 150 ng/mL (375 nmol/L). This will require 2,000–5,000 IU/day for every 25 pounds of body weight, and occasionally more than that.

However, he will need frequent monitoring of his 25(OH)D levels as these are pharmacological doses, not physiological doses, meaning these doses should only be given, and monitored, in the hope of a treatment effect in the serious disease that has been linked to vitamin D deficiency. It is best done under the care of a knowledgeable physician. I know that is not always possible and time is of the essence in autism as it is a progressive, inflammatory brain disease.
$5 off iherb.com. Use:REW815/$5 off pureformulas.com Use:RJNXCX

LittleBirdsLoved
Posts: 42
Joined: Tue Apr 03, 2012 3:08 am

Re: anyone using high dose vitamin D? check out this case

Postby LittleBirdsLoved » Sat Sep 15, 2012 11:43 am

MTS
Last edited by LittleBirdsLoved on Mon Feb 04, 2013 1:08 pm, edited 1 time in total.

JeniB
Posts: 5021
Joined: Thu Sep 04, 2008 10:10 pm

Re: anyone using high dose vitamin D? check out this case

Postby JeniB » Sun Sep 16, 2012 7:19 am

two days of 6000iu of vitamin d and my son is talking even better than before. He isn't holding the handrail to go up and down the stairs. We were giving cod liver oil and I stopped that. I've been giving vitamin D, just not this amount and vitamin A is always cancelling it out anyway.

He said his lips tingled last night, was sitting on the stairs before we went out to eat and said "I don't talk to people that much" I asked him if it was hard to and he said "yes, it is" When I asked him more about it he just started to get upset and told me he didn't want to talk about it anymore. Now, we do have language and he's stopped all of his stimming and most of his OCD and is going to kindergarten without an aide right now (rides the bus too!)...which is very far from how severe he was, but still his language is behind and his fine motor he still struggles with. Still not riding a bike. The teachers are having to work with him one on one for his writing activities. I'm kicking myself for not trying this before, more aggressively. especially since he had the frontal bossing, the fractured bone and low muscle tone AND tetany (mild CP diagnosis too). He has always had low calcium in his hair. This is my guess...the microbe he has turned off the vitamin D receptor with the assistance of too much copper...then, this way the minerals collect in the gut so they can form their biofilms. Vitamin D helps calcium and mineral absorption FROM THE GUT. It helps build bone and teeth. My son's teeth have always looked terrible. They are much whiter now and no cavitities so far, thiamine is helping with it somehow, allowing more minerals to be used like phosphorus I think. I feel that Dr. Cannell is finding that the higher doses are working because....I'm thinking...the infection is causing the body to need it. This part, he hasn't figured out and I bet you that it is why our kids need levels to max at almost 150. I think it's odd that it would take so long to get levels up high enough Mimicry. Didn't you say you had lyme disease before? I wonder how much of a role this played in the plummeting vitamin D too? What I found, with all the years of zinc supplementation was that it didn't cause my son's copper to go to normal levels. It just prevented it's absorption. I've yet to see a recovery like in this article with zinc or vitamin A supplementation that the DAN's are recommending. And it's not the only recovery with vitamin D. There's several. Because i had read about another boy who recovered with vitamin D only a few years ago. I honestly can't believe no one is listening to this doctor. or doing this. I bet all of us here that have tried vitamin D never stopped vitamin A like he recommends. Many of us have done the high dose vitamin A protocol. No recoveries from it however. Not a single one that I've read.
Jen
(mom of 3)

iherb referral code: HOF516
save $5 on first purchase

mimicry
Posts: 2143
Joined: Fri Jan 15, 2010 6:57 pm

Re: anyone using high dose vitamin D? check out this case

Postby mimicry » Sun Sep 16, 2012 9:12 am

I am not sure why it took so long with me, or if that's typical. 6 months was the interval I was tested at, and I was doing 10,000 iu daily. I just saw a post I made back in 2010 when I started talking about D where I said my levels fell at 1000iu a day, I had forgotten about that.

I have tried to bring up vitamin d before, and as was the flow of the board at the time, very vocal AC peeps shut down the discussion. And actually the case study you linked in the thread was brought up back in 2009. viewtopic.php?f=4&t=18216&p=151487&hilit=Vitamin+D#p151487

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: anyone using high dose vitamin D? check out this case

Postby kulkulkan » Sun Sep 16, 2012 11:10 am

Come to think of it, my son did very well on cod liver oil with 1000iu vitamin D only (our first wow) compared to the Carlson brand with lower dose Vitamin A and Vitamin D. I always thought it was the higher DHA/EFA in the former and didnt even consider the Vitamin A/D levels. We have never tested D levels but will now.

Stjude0011
Posts: 309
Joined: Tue Jun 21, 2011 1:01 pm

Re: anyone using high dose vitamin D? check out this case

Postby Stjude0011 » Sun Sep 16, 2012 5:55 pm

So funny ever since we went to the dan when my son is 18 months old he suggested that we continue to give him cod liver oil and also give him d3 2000 iu's no wonder we never really seen the d go to work seen as the nordic naturals had high vitamin a. Since reading this thread I have cut out cod liver oil bumped up the d3 a little higher just to see.

A few months ago we had a speech bump and thinking back I remember it was a whole month that we did not give cod liver oil because we moved and I held off on ordering it since I had everything else. We were still doing d3. I thought it was the raw milk and the b vitamins methyl folate, etc... Its possible it was the vitamin d.

Yet another post that has been thinking!! Thank you Jen B for your hard work!!

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: anyone using high dose vitamin D? check out this case

Postby kulkulkan » Sun Sep 16, 2012 11:20 pm

Here is another paper published just last month. Study found about 48% ASD kids studied deficient in vitamin D level and strong inverse correlation to some myelin (anti-MAG) antibodies.

http://www.jneuroinflammation.com/conte ... -9-201.pdf

I know for a fact my wife is deficient in vitamin D (<20ng/ml) and has been for number of years (as checked during annual exams) and likely during pregnancy as well. 1000IU daily didn't make much of difference to her levels. Going to get our son tested this week.

JeniB
Posts: 5021
Joined: Thu Sep 04, 2008 10:10 pm

Re: anyone using high dose vitamin D? check out this case

Postby JeniB » Mon Sep 17, 2012 11:31 am

are any of you stopping vitamin A too? seems like this is his suggestion. I've got a call into our neuro who tested D levels can't wait to find out the levels and if it was hydroxy. My symptoms right now match it to a T because of my parathyroid symptoms. This is a great read right here...

http://www.thedoctorstv.com/Larissalle

I think that anyone new coming here should at least order the simple test kit on his website and work at getting levels in the range he indicates. 100-150. Stopping ALL vitamin A and giving it time to work. I hope that if this is a key factor for so many, that someone new here, takes this advice seriously and doesn't disclude it like I did early on. The more I read, the more convinced I am that most of us should at least give this a try.

It detoxes the brain, for pete's sake!!!

just getting the chronic inflammation down would be a great benefit. But I feel many here or in other autism circles feel too afraid to drop their beloved vitamin A supplementation. I think that if one has given high doses in the past, it may take longer to see it's effects. I honestly hope this doctor is right and it's a simple thing to fix for so many children and families out there. I did mention that vitamin A could be toxic a while back in the discussion forum when it was brought up. I think it's dangerous to give high doses of vitamin A.
Jen
(mom of 3)

iherb referral code: HOF516
save $5 on first purchase

JeniB
Posts: 5021
Joined: Thu Sep 04, 2008 10:10 pm

Re: anyone using high dose vitamin D? check out this case

Postby JeniB » Mon Sep 17, 2012 11:41 am

just got the call. my son's level was 35 as hydroxy in March!!!! I'm excited, not that his levels were low, but it answers some big questions for me. I think this is going to be big for him. I also stopped his phoschol. High levels of phosphorus can also lower vitamin D. Which is in soda btw. I love coca cola...no wonder my heart flutters, started getting insomnia and such. I also was taking the phosphatidyl choline. This is why parents, you keep digging until you get to the bottom of it all. My son is doing very well, but still has issues that haven't resolved. I started CLO and am now stopping it. Soooo glad to have come across this again. Hopefully, not too late!
Jen
(mom of 3)

iherb referral code: HOF516
save $5 on first purchase

alexsdad
Posts: 133
Joined: Fri Dec 30, 2011 1:31 pm

Re: anyone using high dose vitamin D? check out this case

Postby alexsdad » Mon Sep 17, 2012 2:15 pm

JeniB - Are you also giving your son Vitamin K, magnesium, calcium and zinc as Dr. Carnell suggests? I wonder how much of they should be given. (particularly zinc)

Pearl1981
Posts: 638
Joined: Sun Jul 17, 2011 7:48 pm

Re: anyone using high dose vitamin D? check out this case

Postby Pearl1981 » Mon Sep 17, 2012 2:50 pm

I was definately so deficient in vitamin D in pregnancy and I also have insulin resistance which somehow effects it
My daughters also came up deficient in tests
We hardly get sun here in London and my kids have a natural "tan"'skin tone and apparently this skin tone does not absorb the sun well.
I give 2500 gel supp per day.
They love it! Vitamin A helps her behaviour a LOT don't get me wrong but vitamin d is so important
Too and it helps magnesium does it not? We are
Currently in a yeast
And cassein throw back hell
Daughter 5y.o lost diagnosis - 100 rounds cutler. Aspergers/ autism @2yrs

Dani
Posts: 2297
Joined: Tue Mar 04, 2008 5:55 am

Re: anyone using high dose vitamin D? check out this case

Postby Dani » Mon Sep 17, 2012 4:34 pm

JeniB wrote:Dani, aren't you addressing vitamin D and how much have you been giving for how long? I remember you mentioning your daughter not being able to keep levels up. Gosh, Mimicry...you took 10,000iu for 6 months to get levels to 60? Makes me wonder about why some do horrible with fish oil too. The high amount of vitamin A in it. The copper theory along with this explains some things, for sure.


You have a good memory, JeniB.

We were addressing Vitamin D. It was very low for my daughter when we first tested it. We live in a warm sunny location so I though the Vitamin D levels would be ok. We're always at the beach in the summer and at parks other times of the year. I want to say the Vitamin D level was around 17 when we tested. Then we gave high doses of D3 over a period of weeks, it went up. It took a while though. Then when it got to around 50 the doctor was happy so we got lazy and slacked off with the D3. It's low again the last time we tested it. We thought giving about 1,000 IU would be enough to maintain but she has a mutation (according to her Yasko results) where she needs high dose Vitamin D regularly.

Now she has this weird side eye gaze. I don't know if it's Vitamin A related because of all the Vitamin D we've given. I know often people say their kids get that eye gaze from lack of Vitamin A. So now we're doing the fermented cod liver oil from Blue Ice (man does it smell...it's nasty! I'm surprised she even took it :lol:) another time of day from the Vitamin D.

The Vitamin D when it went up the first time made a noticeable difference in how often my daughter got colds. Before that she had a cold nearly every month. She was sick a lot. We had to get antibiotics often because she'd get a respiratory infection from a cold. After the high dose Vitamin D supplementation, that problem went away entirely. I can't remember the last time she had that problem following a cold. And even though her D3 levels went down it hasn't been as low as it was the first time around.
I didn't know how strong I could be until I had to be.

JeniB
Posts: 5021
Joined: Thu Sep 04, 2008 10:10 pm

Re: anyone using high dose vitamin D? check out this case

Postby JeniB » Sat Sep 22, 2012 7:32 am

Jen
(mom of 3)

iherb referral code: HOF516
save $5 on first purchase

dabaxter
Posts: 4052
Joined: Wed Nov 14, 2007 12:50 pm

Re: anyone using high dose vitamin D? check out this case

Postby dabaxter » Sat Sep 22, 2012 10:02 am

JB,
I appreciate you starting this thread. I'm going to give this a try soon, starting at 10,000IU for 3 weeks.

http://www.drpasswater.com/nutrition_li ... vitd5.html
Cannell: That’s right, it must be. I’ve seen that when the mothers give their child a couple thousand IU of vitamin D and their 25-hydroxy vitamin D blood levels get up to 40 or 50 ng/ml, the mothers will say that there is a little improvement, but when I suggest 6,000 IU per day, and the child takes that and a month later, the child’s blood level is up to 80 ng/ml, then the mother is saying, “Wow!”

For autistic children, I like to get their blood levels up to about 100 ng/ml. For many children that takes up to 10,000 IU of vitamin D daily
$5 off iherb.com. Use:REW815/$5 off pureformulas.com Use:RJNXCX

dabaxter
Posts: 4052
Joined: Wed Nov 14, 2007 12:50 pm

Re: anyone using high dose vitamin D? check out this case

Postby dabaxter » Sat Sep 22, 2012 10:06 am

http://blog.vitamindcouncil.org/2011/07 ... -toxicity/

Dear Dr. Cannell,

My son James weighs 48lb, he is 7 yrs old. He had autistic symptoms for almost 5 years (first noticed when he was 2 yrs old). I initially started him on 2,000 IU last November after he caught the flu. Two weeks later, I noticed improvements in areas of social interaction, verbalization. I then increased his dosage to 5,000 IU per your recommendation, and he got better.

His progress has been so great that his kindergarten teacher and Speech Therapist have recommended that he exit the Early Intervention Program.

He is more social, making friends easily, participating in cooperative play, and soon to be in a regular classroom. I think it might be bad luck to say he is cured. Is that possible in a genetic disease? A friend told me he must never have had autism but whatever it was, I don’t want it back. I remember what he was like, and me, too. No thanks.

I’m writing because my son’s pediatrician just called and told me James’s 25(OH) level was 122. He believes he must be toxic because of that level and wants me to stop giving him all vitamin D supplements and recheck his vitamin D level next month. James feels great and shows no signs of toxicity.
$5 off iherb.com. Use:REW815/$5 off pureformulas.com Use:RJNXCX

JeniB
Posts: 5021
Joined: Thu Sep 04, 2008 10:10 pm

Re: anyone using high dose vitamin D? check out this case

Postby JeniB » Sat Sep 22, 2012 12:47 pm

Just today I've gotten three I love you's. He has this past year, been saying this at night time anyway. But it is genuine sweetness right now. The first few days, he was really grumpy and off and on. But more verbal than before. Not wanting to stay on task at school, but the teacher says he is the slide master at the playground making comments to each of the kids going down the slide and playing normally with them (which he does do now, just not all the time like a kid his age would normally do).

too much vitamin A will cause hair loss and brain inflammation. In babies, they look for a buldging fontanel. It looks like this doctor is very serious about watching levels every month, which I like and it can be done at home. Something many of us are not doing with all the vitamin A that we are all being recommended to use.
Jen
(mom of 3)

iherb referral code: HOF516
save $5 on first purchase

dabaxter
Posts: 4052
Joined: Wed Nov 14, 2007 12:50 pm

Re: anyone using high dose vitamin D? check out this case

Postby dabaxter » Sun Sep 23, 2012 11:42 pm

http://alphabrainreview.com/talk-nootro ... ew=answers

While for most nootropic substances discussed here there are varying degrees of real scientific data, some nothing really and others a bit more, vitamin D is one substance that has been shown again and again to have a major major major effect on overall health and cognition consistently for the past 30+ years in repeated double blind studies around the world.

It is incredibly inexpensive (especially compared to other substances). It is widely available and you don''t need a prescription. It is safe to use and you have to be absolutely insane to OD on it.

It has been shown:
to significantly decrease cancer risks
beat vaccines at fighting the flu
improve balance, muscle twitch speeds, reaction speeds
enhance cognition and mood
and on and on and on.... the benefits are innumerable.
And while your body can automagically make its own supply for the vast majority of people the conditions for that just aren''t available because of where they live, their lifestyle and other factors.
Well, actually it isn''t really a ''vitamin'' per se. It is actually a secosteroidal hormone vital to myriad of functions in your body.

The recommended intake is 600 IU but that is laughably out of date. Vitamin D approaches toxicity at levels of 40,000 IU per day for several months. Most people need to take anywhere between 3000-8000 depending on how much sun they get, the color of their skin, their starting serum levels,
$5 off iherb.com. Use:REW815/$5 off pureformulas.com Use:RJNXCX

JeniB
Posts: 5021
Joined: Thu Sep 04, 2008 10:10 pm

Re: anyone using high dose vitamin D? check out this case

Postby JeniB » Tue Sep 25, 2012 5:55 am

I think, vitamin A for our kids, is controlling pathogenic bacteria. I'm seeing an increase in bacterial behavior at the moment, he did have a banana, which we never do, so I'll keep everyone posted when that flushes out of his system.

When I was a teen, I used a prescription retinol A cream to clear up my acne. It really smoothed out my skin nicely. I have a feeling that more is going on with autism than vitamin issues causing it. Something is causing the vitamin issues, not the other way around. So, I think we need it back in, if it doesn't get better soon. He's starting to have fears that I haven't seen in a while with things looking odd to him on tv. Could be wrong however, and I feel it's totally worth trying. Who know's which kids would respond like the one's mentioned in the article? Every stone turned is how this stuff works i'm afraid.
Jen
(mom of 3)

iherb referral code: HOF516
save $5 on first purchase

isabelmum
Posts: 783
Joined: Tue Sep 14, 2010 11:20 pm

Re: anyone using high dose vitamin D? check out this case

Postby isabelmum » Tue Sep 25, 2012 12:41 pm

We are doing 2000 IU for the longest time.. One of our staple supplement. Her level was 20 and now is 40. I have not seen significant result.


Return to “Diet and Biomedical Treatments for Autism”