Summary by VitraminDWiki: take 4,000 IU and try to peak vitamin D level in blood to 150 ng then bring it back down to 90-100 ng, Consider what co-factors might be needed. Monthly blood tests only for Vitamin D, Vitamin K, and Iron.
At the end of the sequence Dr. Cannell of the Vitamin D Council says “If you do as I say, I predict that in one year you will deny that your son ever had autism.
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I have a three and half year old child who was diagnosed with autism spectrum disorder, verbal apraxia of speech, and hypotonia. I knew something was wrong very early on in that he was extremely late in gross motor skills, such as sitting independently and walking.
Although he eventually was able to sit and walk, his speech was severely delayed. Despite months of speech therapy, he was still unable to complete words. His speech though is very infrequent and is monotone and robotic like when he does speak. He has trouble with social language (engaging in conversations, asking questions and initiating communication). He also engages in stimming behaviors, like hand flapping, vocalizing, and throwing himself on the floor
I have read your website about autism and vitamin D deficiency, and I am desperately trying to find a doctor in the NY metro area who is knowledgeable about treating children like this with vitamin D. I have been to so many doctors who keep telling me if he takes 400 IU's per day in his vitamin and drinks milk, then he is not deficient. I would be so grateful for a recommendation.
Dear Amanda:
I know of no such doctor in the NYC area but print out the article below in Acta Paediatrica and take it to him; your pediatrician will know this journal as it is largest pediatric journal in the world.
http://onlinelibrary.wiley.com/doi/10.1111/j.1651-2227.2010.01883.x/pdf
His self-stimulation (stimming), how often does he do it or how many hours per day?
By the way, you can easily treat him yourself. How much does he weigh?
John Cannell, MD
Thank you so much for responding to my email. I am desperate. This autism is not what I had in mind for my child’s life or my family’s life. He spends about 1-2 hours a day stimming, mostly hand-flapping.
Does he need routine monitoring while on the vitamin D to check his 25-hydroxyvitamin D levels?
I am willing to travel if you know of a doctor affiliated with Boston's Children’s Hospital, or anywhere else on the east coast.
He weighs about 30 pounds. He is currently taking: 3200 mg of fish oil, 400 IU's of vitamin E, 3,000 mg of phosphatidycholine, and a standard daily dose of a Poly Visol vitamin (with 400 IU's of vitamin D)
If he starts vitamin D, should he continue with his current regimen of E, fish oil and choline? I am not sure which combination of supplements and vitamins would be appropriate. I do not want to give anything that is contra-indicated or toxic.
This is why I was looking for a doctor who is knowledgeable, but cannot seem to find one. My pediatrician just sneered and returned your autism and vitamin D paper to me without reading it.
Thank you so much for your help.
Dear Amanda:
I do not believe that all these supplements are needed, but I doubt they do any harm, except the Poly-Vi-Sol, which contains retinol. Stop it.
Go to the health food store and get some “Ddrops,” 1,000 IU per drop, not 400 IU per drop. They are marketed in the USA by Carlson.
John Cannell, MD
The dosage then would be 1,000 IU's for him? I already bought capsules with 2,500 IU per capsule.
Does he also need the magnesium, zinc and vitamin K as cofactors? What about the vitamin E, B6, amino acids and fish oil?
Thanks so much for your help.
Dear Amanda:
No, his dose is not 1,000 IU/day; his dose is 4,000 IU/day. Thus, as each capsule contains 2,500 IU, one day give him two capsules and the next day one capsule, and keep repeating, this is close enough to 4,000 IU/day. You want his 25(OH)D around 100 ng/ml to start.
Yes, those are the cofactors he needs, along with iron as he is a child. If he regularly eats red meat, he can get his iron from his diet. He needs seeds and nuts (like a nut butter) for magnesium and zinc, milk for calcium, and a vitamin K2 supplement, about 100 micrograms. Forget the vitamin E, amino acids and fish oil pills. Feed him salmon several times a week.
John Cannell, MD
Thanks very much.
The problem is that I don't have a doctor to check his blood.
If I told my pediatrician that he was taking 4,000 IU's per day of vitamin D, he'd start screaming. He told me not to give him anything beyond the 400 IU's in his multi- vitamin.
Are there medical doctors using vitamin D to treat autism? I have checked with several major children’s' hospitals and cannot find any.
Dear Amanda:
No, I know of no pediatrician in the NYC area who knows anything about autism and vitamin D, in spite of the fact that I first thought about this in 2006 and first published it in May of 2007 on the website and in a medical journal on October 24, 2007. I now believe that many autism researchers think my theory is true but they also know they may be out of work if it is shown to be so. If you Google autism and vitamin D, you will get almost half a million hits. Someone is reading about it, apparently not the pediatricians.
The third or fourth hit you will get is a Scientific American article, written by Gabrielle Glaser. I worked with Gabrielle on the story, supplying her with all the evidence and the citations. After Gabrielle was finished, the editors at Scientific American told her to remove all references to me as the one who first proposed the theory and to credit someone else, anyone else.
I have since learned that one of the Scientific American editors has a child with autism, believes vaccinations caused the autism, and was angry with me for ridiculing the vaccination theory. If you want to know how it really happened, read:
Julius Goepp, MD The Link Between Autism and Low Levels of Vitamin D. Life Extension Magazine April 2009
in-home vitamin D test from our website and have a neighbor or relative, who is a nurse, do a heel stick to obtain the little bit of blood needed to complete the test. Or, you can join Life Extension Foundation and get the vitamin D blood test through them.
John Cannell, MD
I would greatly appreciate it if you could please let me know what the optimal blood level 25 (OH) D should be for him, (he's three and a half).
Thanks so much
Dear Amanda:
For now, give him enough vitamin D to obtain a 25(OH)D of around 100 ng/ml. We may want to increase his dose high enough to obtain a level of _150 ng/ml in the future__, which is perfectly safe in the short term, so as not to miss a treatment effect or to be sure we are seeing the full treatment effect. Six months after he fully responds, you can begin to slowly lower the dose to obtain levels of 70-80 ng/ml.
The reason to seek the very upper limits of normal in your child is simple, your child has a serious – very serious – illness, a brain disease, one that may destroy his life, and yours. For reasons I do not yet understand, many autistic children first start responding to vitamin D only when their blood level reaches 90-100. In fact I know of a case where the mother made a mistake and gave ten times the suggested dose and the autistic child had a miraculous and rapid response. How could that be? I do not know.
Nor do I know how a genetic disease could be cured with vitamin D. That makes no sense to me but enough mothers have written to me that I believe that it will routinely happen if retinol is stopped and enough vitamin D is given. It reminds me of Thomas Huxley who said, “Sit down before fact as a little child, be prepared to give up every preconceived notion, follow humbly wherever and to whatever abysses nature leads, or you will learn nothing.”
John Cannell, MD
Thanks so much.
At this level is there any risk of premature closure of the epiphyses? My son is only three and a half.
Thanks again, I really appreciate all of your help. How do you have the time to help me for nothing?
Dear Amanda:
No, no risk of premature epiphyseal closure. Here is my cell phone number, give me a call on a Monday; I have Mondays off from work at the hospital. You are too worried and your anxiety may upset your child.
While I have proposed a number of vitamin D theories, my heart is with these children. If I didn’t have to work at the hospital four days a week, I would see autistic children five days a week. I daydream that a rich guy makes that happen and the autism clinic he sponsors is free for the families. For now, I do what I can with the limited time I have available.
John Cannell, MD
Thank you so much for speaking with me this past Monday regarding my son with autism.
I had his 25-hydroxyvitamin D level checked this week as a baseline and to my surprise his level was 51.7 ng/ml. I had been taking him out in the sun with no sunscreen about a week and a half prior to the test, and I am wondering if this could have impacted his levels that quickly if he was initially deficient. I had also started the 4,000 IU's two days prior to the test, but this should not have had an impact.
My question is at this point whether I should continue the 4,000 IU's of vitamin D or if I should reduce the amount to 2,500 IU's per day.
His metabolic panel also showed a high BUN/creatinine ratio of 55, and lower levels of protein (4.8 g/dL) and albumin (3.2 g/dL). We have to take him back next week to have his amino acids checked. I am wondering if the D affects these levels as well.
Thank you so much for all of your help,
Dear Amanda:
Keep him on 4,000 IU/day together with the sunshine and plenty of fluids. Make sure he eats dairy three times a day (calcium), salmon (omega-3), red meat (iron), and vegetables (multiple vitamins), nut-butter (magnesium) with an otherwise varied diet. If he had trouble in the past with dairy, he may not have such trouble on the vitamin D. Don’t worry about these other blood tests, they did not need to have been obtained and these mild abnormalities will correct themselves in time.
Also, remember, if the healthiest person in the world repeatedly had 100 different blood tests, some would eventually be abnormal. That’s simple math. I have little patience for the “autism doctors” who find well insured or wealthy parents, draw 100s of blood tests on the child, find the few that are abnormal, do something (anything will work) and then repeat the blood test next month and say to the mother, “look, the test is better, your son is improving under my care.” One of the few things worse are the academics who say, “Nothing can be done. It is a genetic disease. Here is a prescription for an antipsychotic if he starts beating on his sister.”
John Cannell, MD
My son has started on 4,000 IU's of D and over the last several days we have noticed and increase in hitting, biting, and temper tantrums. I was wondering if other parents have reported this kind of behavior during the initial days of vitamin D supplementation, and whether it means we should stop the vitamin D?
Thank you so much for your help, Amanda
Dear Amanda:
This too shall pass; just keep giving him 2 capsules one day (5,000 IU) and one capsule (2,500 IU) the next. Is he still going into the sun?
John Cannell, MD
My son's 25 (OH) D level was only 64.8 ng/ml, (this was after 2 weeks of being in the sun without sunblock and supplementing him with 4,000 IU's of vitamin D/day). I try to take him out 20-30 minutes on sunny days without sunblock. He may be a little better.
Also, how often should the blood work be done to check his 25 (OH) D level? As the autumn is coming, his sun exposure will probably be decreasing.
Dear Amanda:
Yes, the sun and 4,000 IU/day together is fine for now.
Check his 25(OH)D every month
John Cannell, MD
My son has been on Vitamin D for a month now and I wanted to report back to you that we have seen repeated bursts of spontaneous language. He has also started asking questions, and is initiating conversation with us. It has been truly remarkable; the teachers at school cannot believe it. Additionally he is pedaling on his tricycle, just like a regular kid, whereas before, he was struggling just trying to pedal. We are very impressed with his progress and I do not know how to thank you so much for all of your help. I’d give the Vitamin D Council a million dollars if I had it.
About a month ago, we had a metabolic panel done on him and his protein, calcium and albumin levels were a little low. We followed up two weeks later with an amino acids plasma test (this was done when he was on the D for only two weeks). I just received the results and several of these levels are high-in umol/L: proline (396) alanine (605), valine (337), methionine (51), tyrosine (119), lysine (299), and histidine (136).
The high alanine level was of most concern because the lab added the following footnote: "In this sample, the concentration of alanine was elevated. This finding could be indicative of secondary lactic acidemia, acute illness, and reduced caloric intake".
My son's height is in the 75% percentile and his weight is in the 50th, he has never been failure to thrive. Also, his copper, carnitine, and B vitamin levels, (B1, B6 and B12) were normal-I know these are generally deficient in autistics, Actually his B12 level was high 1029 pg/mL. Given these levels should I continue giving him the vitamin D? Could the other supplements he is taking cause these abnormalities in the amino acids?
Thanks so much for your help. My mother can’t believe it; neither can my husband, neither can I. How long will this improvement last?
Dear Amanda:
I am so glad. I woke up last night with a nightmare that I had told you to stop the vitamin D when he seemed worse.
This improvement in his autism should be permanent, if you continue the vitamin D with the cofactors and avoid the retinol. This improvement will include his coordination and physical ability, not just his autism.
You still need to measure his 25(OH)D every month as you may have to adjust the dose (either up or down). For example, say his next vitamin D level is 90 ng/ml. My immediate question is “would his autism improve even more rapidly if his level was 100 ng/ml? You want to keep increasing his level by increasing his dose up to 150 ng/ml until it is clear that the extra dose had no additional effect. Then back down until he seems a little worse, then go up until he is better again and then you will know the correct vitamin D dose for him.
Stop having all this other stuff measured and stop worrying about it. Someone, whoever is ordering all these blood tests, is defrauding you and your insurance company. Stop all these supplements except the vitamin D, vitamin K2, and maybe a little pediatric iron.
As an aside, one of the special masters in the autism/vaccine court recently ruled for the child’s family, awarding the child 1.5 million dollars. However, the judge acted on the child’s petition because the petition filed by the other side, the Justice Department, agreed completely with the child’s lawyer. In other words, when this case came in front of the judge (special master), both sides had already agreed on the award.
Sharyl Attkisson, CBS News, September 9, 2010. Family to Receive $1.5M+ in First-Ever Vaccine-Autism Court Award
Sharyl Attkisson. September 14, 2010. Vaccines, Autism and Brain Damage: What's in a Name?
If you think the vaccination/anti-vaccination debate is a new one, read the article below in the British Medical Journal, published 100 years ago!
Pomeroy. Mr. Pomeroy on vaccination. BMJ, January 22, 1910.
If you do as I say, I predict that in one year you will deny that your son ever had autism.
John Cannell MD
Executive Director
Vitamin D Council; San Luis Obispo, CA 93401; 1241 Johnson Ave., #134