April 2, 2010
This is a periodic newsletter from the Vitamin D Council, a non-profit trying to end the epidemic of vitamin D deficiency. If you are not subscribed, you can do so on the Vitamin D Council’s website: www.vitamindcouncil.org.
I continue to get encouraging emails – like the one at the end of this newsletter – from parents of autistic children. At the same time, some researchers in the USA continue to deride my theory while scientists in Sweden are starting to piece it together. Three Swedish papers were published this month that support the vitamin D theory of autism.
In the first paper, Dr. Mats Humble and his colleagues – at the Karolinska Institute in Stockholm – measured vitamin D levels on 117 adult psychiatric outpatients. They found that the 10 adult patients with autism had the lowest 25(OH)D levels of any of the other groups, including the patients with schizophrenia and depression, an average of about 12 ng/ml, a level known to cause rickets in children and osteomalacia in adults. Even more interesting, they reported that some of the patients with depression and schizophrenia seemed to improve when treated with an average of about 4,000 IU of vitamin D per day. They did not say if they treated any of the vitamin D deficient autism patients.(Humble MB et al. Low serum levels of 25-hydroxyvitamin D (25-OHD) among psychiatric out-patients in Sweden: Relations with season, age, ethnic origin and psychiatric diagnosis. J Steroid Biochem Mol Biol. 2010 Mar 7. [Epub ahead of print)
“Mothers of autistic children have very low 25(OH)D levels”
The second paper, by Dr. Elisbeth Fernell and colleagues – from various institutions in Sweden – measured vitamin D levels in mothers about six years after they had given birth to a child now diagnosed with autism. The Somali mothers had very low vitamin D levels, less than 10 ng/ml. The trend was in the direction of lower vitamin D levels for Somali mothers with autistic children, compared to Somali mothers without an autistic child. (Fernell E et al. Serum levels of 25-hydroxyvitamin D in mothers of Swedish and of Somali origin who have children with and without autism. Acta Paediatr. 2010 Mar 5. [Epub ahead of print])
“Another scientist endorses the vitamin D theory of autism.”
The third paper, an invited editorial in Acta Paediatrica by Dr. Darryl Eyles – of the University of Queensland – was more interesting, at least to me, as he issued an outright endorsement of my autism theory, not that it is proven, but that it is parsimonious, a word and concept I love. Darryl is a prolific researcher and was involved in many of the rat studies that showed gestational vitamin D deficiency damages the brains of the infant rat pups. It was the work of Dr. Eyles, together with that of Dr. John McGrath, which helped me formulate my vitamin D theory of autism. I wrote about their research in 2005, before I realized that the human brain damage I wrote about was manifesitng itself as the autism epidemic. Shortly after I wrote the newsletter below, I saw an autistic child at a shopping mall and started my research into autism and vitamin D. (Cannell JJ. The Tuskegee Experiment. Vitamin D Newsletter 7/17/05)
Anyway, this month Dr. Eyles said, “Low maternal vitamin D remains a highly parsimonious explanation for certain prominent features of autism,” explaining how well their animal data fits with human data on autism. Perfect parsimony is when one theory explains all the known facts, and if there is one major autism fact the vitamin D theory of autism cannot explain, I have yet to locate it. (Eyles DW. Vitamin D and Autism, Does skin colour modify risk? Acta Paediatr. 2010 Mar 8. [Epub ahead of print])
“Pregnant women need 5,000 IU/day”
Dr. Eyles discussed the crucial importance of all pregnant women having adequate amounts of vitamin D and said he was eagerly awaiting the results of the clinical trial Bruce Hollis and Carol Wagner of the Medical University of South Carolina have conducted. They have given 4,000 IU/day to pregnant women, comparing that to 400 IU/day (the amount in prenatal vitamins) and to 2,000 IU/day. However, several months ago in Brugge, Belgium, Dr. Hollis recently presented some of the data from his clinical trial, reporting that 4,000 IU/day in pregnancy is not only safe, but significantly reduces complications of pregnancy more than 2,000 IU/day does and a lot more than 400 IU/day does. All pregnant women should be on at least 5,000 IU of vitamin D3 per day and take neither cod liver oil nor any retinyl acetate or retinyl palmitate (vitamin A).
Dear Dr. Cannell: (email received 5 weeks ago)
I have just recently learned about the Vitamin D link with autism. I am starting to supplement my 12- year old with Vit D because it is such a cheap and easy thing to do, with low risk. I want so much to be able to help him!! I am hoping very much that this will help, yet I am afraid to hope! He has Asperger’s type autism, and he was recently diagnosed with oppositional defiant disorder, which is no surprise to me considering his very oppositional behavior. So, my question is: has Vitamin D supplementation helped children like my son? Is it too late??
He really is an indoor kid. He is a red-head and burns easily and I’ve always protected him from the sun, thinking he must get enough vitamin D from the milk we drink. Well, I was probably wrong, I feel so guilty—is it too late? I am starting him on 5000 IU of D3; considering he is starting puberty now and weighs almost 110 pounds; does this sound reasonable? Has anyone out there seen help for high-functioning kids? He has so much social dysfunction, self-stimulatory behavior (belly-smacking and hair pulling, nail biting, etc.), paranoia, attention problems, and real difficulty with group dynamics, and of course, obsession with computers.
He is really smart (yet can barely use this because of his behavior), and wonderful with small children, animals, severely disabled children, and the elderly. Isn’t that interesting?? I am hoping that this helps. PLEASE reply to me email. My husband and I are discouraged and depressed about it all, and concerned for my son’s future. His doctors imply there is no hope and think vitamin D is nonsense. I can barely get my husband to interact with my son anymore—he is so discouraged by our son’s negativity and defiant behavior. I realize there is no “magic” pill, but please let me know if there is any hope.
There is always hope. As I wrote in my autism paper, I think a treatment effect is likely, especially with younger children. The fact that your son is 12 years old makes it less likely that vitamin D will have a treatment effect but it is certainly worth trying. I think it likely that there are two reasons why some parents do not see a treatment effect in their autistic children. Again, a treatment effect is quite different than a cure.
The first reason is that many of these children have been overdosed with vitamin A, either as bolus doses (large one time doses) some DAN practitioners use or from the 3,500 IU of preformed retinol in the powdered multivitamin commonly used for autistic children. Be sure to stop any cod liver oil or any vitamin A that he may be taking in his multivitamins or other supplements. No one knows how long it takes for excess vitamin A to get out of the body but, as no known mechanism exists for its degradation, it may take years.
This is very different than vitamin D. Vitamin D is transformed in the cells of the body to a steroid hormone, calcitriol. It functions by turning genes on and off; more than 1,000 such genes have been discovered. As soon as it functions to turn on or off the genes in question, perhaps a matter of seconds, the calcitriol is rapidly degraded to calcitroic acid and then removed from the body. Thus, unlike vitamin A, which is used again and again, vitamin D is rapidly catabolized (degraded), removed from the body, and must be replenished.
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 and if that does not work increase the dose until his 25(OH)D level is 150 ng/ml. This will require 2,000 – 5,000 IU/day/25 pounds of body weight, and occasionally more than that.
However, he will need frequent 25(OH)D levels as these are pharmacological doses, not physiological ones, 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.
Good luck, my prayers are with you.
John Cannell MD
Dear Dr. Cannell:
My 12-year-old autistic son is doing better on 5,000 IU of Vit. D3 every day, after only one month! I explained to him why he needs to take it, and he is fine with it. So, it has been over 1 month now. I was planning to get a 25 (OH)D test at the 3 month mark; should I stick to that? Is it a hard test? His behavior has improved in almost all areas. He is still obsessive about his favorite computer games of course, and still smacks his belly when he really feels like it, but it overall is better. He has been doing much better in school behavior wise and has earned his privileges back in several areas. I don’t feel so desperate about everything anymore. He does still throw fits, but everything has been a little more manageable. I have also been bringing him to the YMCA for swimming, hoping more exercise is good for him. He is still very self-focused. I don’t know if that will ever change, after all, that is what autism IS.
I have reduced his meds a little, esp. on non-school days. I have reduced his Adderall by eliminating his third dose in the afternoon, and reduced his second daily dose of Risperdal and Zoloft. (He was not ever on large doses, quite moderate or small ones). One of my friends told me his meds were making him worse but all these meds helped when we started them but now I cannot tell the difference on these lower doses, so I am very happy about that. I haven’t talked to his doctors about it all yet. I am waiting for our next appointment. I have asked them many times about what would be good supplements for him, and all they have ever said is for him to take a multivitamin daily. I don’t think that ever helped at all. I stopped his multivitamin because I don’t want the vitamin A to antagonize the Vit. D. He does eat fruit well, and some veggies.
Both my husband and I are daring to hope and my husband is starting to interact with him again. Thanks again for helping people and writing to me. My blessings to you!
This is very hopeful, especially the improvement in face of the reductions in his medications. My advice is to continue his vitamin D at 5,000 IU per day for now and continue taking him to the YMCA for swimming and make sure it is an outdoor pool during the middle of the day. His sun-exposure should occur when the sun is high enough up in the sky so his shadow is shorter than he is, the shorter the better, the more skin the better. If he is outdoors in these conditions frequently enough, his 5,000 IU/day supplement and the sun should raise his 25(OH)D to about 100 ng/ml.
As he is red-headed and fair-skinned, use no sunblock for the first 10 minutes, or the time it takes for his skin to begin to turn slightly pink, and then put it on. I recommend sunblock that contains zinc oxide, titanium oxide or both. In spite of his fair skin, I predict that as his vitamin D level goes up, you will notice he tans with sun exposure; and then he will need less sunblock.
Obtain a 25-hydroxy-vitamin D (not a 1,25-dihydroxy-vitamin D) every month. You want his 25(OH)D to be high, as high as a lifeguard in Miami in August, so at least 100 ng/ml. Then, even if he is responding to 100 ng/ml, the question arises, “Would he respond even better at 150 ng/ml? From what we know, this is perfectly safe as long as you get regular 25(OH)D tests and keep his 25(OH)D under 150 ng/ml. Documented toxicity (almost always asymptomatic hypercalcemia) has never been reported with 25(OH)D levels less than 200 ng/ml. On our website, you can order in-home vitamin D testing. After you pay $65.00, ZRT will send you a test kit. You will need to stick his finger or his heel to get a small amount of blood on the blotter paper in the ZRT test kit. Maybe a nurse or a paramedic who you know will stick his finger or heel if you can’t stand to do it. If you mess up the first time, just contact ZRT, they will send you another test kit for free.
As far as reducing his psychiatric medication, be sure to do it very slowly, as an abrupt discontinuation may worsen his condition. His Adderall is an amphetamine stimulant, his Risperdal is an antipsychotic and his Zoloft is an antidepressant, but all can be helpful in autism. Also, be sure his psychiatrist is OK with slow reductions in his medication. Ignore anyone who tells you his psychiatric medications made him worse; they have their own agenda and it is not to help your son.
Also, make sure your son has a source of magnesium, zinc, boron and vitamin K. Vitamin D has many co-factors, but these are the four Americans are the most likely to be deficient in. A large handful of seeds and nuts, together with whole grains, will help with the first three and green leafy vegetables with the vitamin K. Trader Joe’s sells sunflower and almond butter, both excellent sources of magnesium, zinc, and boron.
Finally, expect anger and defensiveness from many in the medical profession. Remember, if I’m right, it was not the evil power plants, or the mercury polluters, or the vaccine industry that caused your son’s autism. It was the CDC, the NIH, the AMA, and all the other committees and organizations that fell for the dermatologists’ calculations (the cosmetic industry will give me a larger grant if I warn about sunlight) and who then blasphemed the Sun God. That is, the worst charge you can level against medicine, “You have violated your primary duty; you have caused harm.” If I am right, the current autism epidemic is the worst iatrogenic disease in human history.
I am so glad your husband is starting to interact with his son more. As far as hope goes, Emily Dickenson once wrote:
Hope is the thing with feathers,
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.
John Cannell MD
Vitamin D Council
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