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Frustration and Hope for Autism

Posted Oct 06 2010 1:06am

Amanda is truly frustrated that she cannot find a solution for her child’s autism.  She finds out about the vitamin D relationship to autism for this important nutrient from the sun.  However, she cannot find a medical person locally that will help her with how much vitamin D the child needs.  She then contacts John Cannell, MD of the Vitamin D Council and their conversation over months is recorded in the October newsletter by Dr. Cannell.  It is truly sad that our medical profession is not moving faster and yet very hopeful because children with autism are responding to just plain vitamin D3 and sunshine.

Yet Another Autism Case Report

Dr. Cannell: 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.

Please help me. Thank you so much for your time, Amanda Smith, New York

I know of no such doctor in the NYC area but print out this article in Acta Paediatrica (PDF format) and take it to him; your pediatrician will know this journal, as it is the largest pediatric journal in the world.

The belief that a good diet, together with a standard multivitamin and milk three times a day, will prevent vitamin D deficiency in older children, teens, and adults is common in the medical profession.

In reality, two ways exist to obtain enough vitamin D, the sun or a pill containing thousands of units. In the complete absence of both, vitamin D deficiency will occur 100% of the time — unless cold water fish is consumed eight times a day. Next time you hear someone say that all vitamins can be obtained from a good diet, know that person to be misinformed on the subject.

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?

Dr. Cannell: 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. 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 United States by Carlson.

Dr. Cannell: 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. 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.

Dr. Cannell: 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. 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.

Within the Google results you will find 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.

If his pediatrician will not check his 25(OH)D, simply buy an in-home vitamin D test 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.

Dr. Cannell: 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 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.”

Dr. Cannell: 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? 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.

Dr. Cannell: 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, 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.”

Dr. Cannell: 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

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?

Dr. Cannell: 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.

Thank you so much for all of your help. Amanda

Yes, the sun and 4,000 IU/day together is fine for now.

Check his 25(OH)D every month.

Dr. Cannell:

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? Amanda

I am so glad to hear of your son’s improvement. 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 an initial sum of $1.5 million, with an additional $500,000 per year. 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 .

If you are waiting in the vaccine/autism court, now is the time to change the diagnosis of your child from autism to “mitochondrial disorder and encephalopathy” and hope you are next in line. However, I worry this award will result in another ten year delay in accepting that maternal vitamin D deficiency causes autism, like the bogus vaccine research did.

Sharyl Attkisson. September 14, 2010. Vaccines, Autism and Brain Damage: What’s in a Name? .

Unlike autism, encephalopathy has long been recognized as a rare but dreaded result of vaccination. Such encephalopathy is an immune phenomenon, undoubtedly caused by the most common cause of acquired immune deficiency syndrome: vitamin D deficiency.

If you think the vaccination/anti-vaccination debate is a new one, read the article Mr. Pomeroy on vaccination in the British Medical Journal, published 100 years ago on 22 January 1910!

Getting back to your son, what he needs now is time, time for the vitamin D to do whatever it is doing, time for his brain to repair itself, time for the inflammation to stop, time for his brain to learn, time to make up what he has missed so far in life. Keep obtaining a 25(OH)D every month and keep adjusting the dose. You will be surprised how quickly he progresses. The key is high doses of vitamin D and no retinol.

If you do as I say, I predict that in one year you will deny that your son ever had autism.

John Jacob Cannell MD Executive Director

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