May 2011

In the last few weeks, I (Dr. Cannell) received the two letters below. I was so glad to find out that I may be wrong, that adults with autism – not just young children – may be helped with vitamin D.

Dear Dr. Cannell:

We talked a couple months back about my autistic 3 year old son (now 4). As you suggested, I began giving him 5000 IU of Vitamin D daily. Since starting the vitamin D, I have seen the following improvements;

1. Larry is now sleeping through the night which has a tremendous positive impact on functioning throughout the day. (as well as the functioning of the rest of the family). He does take a sleeping medication as well. I do think the D has had a positive effect on the length and quality of his sleep. He no longer wakes several times throughout the night and sleeps the proper amount of time. He wakes up with a smile.

2. He definitely has more eye contact. He is mostly “present” and aware of his environment. He seems to pay more attention to what is going on around him.

3. He has started a picture program to help him communicate. He was having slow progress with this at school. He started additional home therapy a little after he started the vitamin D. He now communicates very well with a variety of picture cards including cookie, outside and music. When he can’t find his card, he attempts to communicate in an alternative way.

4. He smiles much more. Along with the eye contact, we have had a lovely increase in smiles and giggles. He used to have violent episodes. He is on a behavior medication but since starting the D he seems to be more emotionally engaged with others and his environment.

5. He seems to listen more and respond to his name. This one seemed to start when we started the D and home therapy. I can be outside with him and if he wanders off, I call his name and he responds by stopping, listening and generally following the directions to come back. I can ask him to do simple tasks like throw a wrapper in the garbage of turn off the light and he will do it. He will even hold my hand and walk into stores with me.

6. He has been interacting a little more with his older brother (18 months older). When his brother pays attention to him, Larry lights up and seems excited, smiles and jumps up and down.

7. He initiates more physical contact with others, spontaneously giving hugs or just being close.

Thank you so much, we have hope again. Will he ever be “normal?” Sincerely, Jan

Dear Jan,

I am so pleased. Such dramatic improvement after only two months is a sign that improvement may continue. This appears to me to be evidence that Larry’s genes are not structurally damaged, but before the vitamin D, the involved genes did not have enough of their messenger system (vitamin D) to properly express themselves Yes, he may be “normal,” whatever that is, I just don’t know. I am hoping for a Larry who is happy and able to learn like other children. What his brain needs now is time, time to heal from the genetic, inflammatory, autoimmune disorder that we call autism. A recent South Korean study implies the rate is now almost one child in 35, an epidemic that may bankrupt our medical and civil services soon unless pregnant women and young children start taking the correct amount of vitamin D.

Be sure that he takes no excess retinol, such a retinyl acetate or retinyl palmitate, and no cod liver oil. He also needs approximately 125 mg of magnesium, 5 mg of zinc, 2 mg of boron, and at least 80 mcg of vitamin K2, the vitamin D cofactors Americans often lack. Seeds and nuts are good source of all but the K2, which is usually taken as a supplement. Trader Joe sells sunflower and almond butter that autistic kids seem to like.

Obtain a 25-hydroxy-vitamin D in two months with the target range being high normal, around 80-100 ng/ml. He may require more than 5,000 IU/day to obtain such blood levels.

Stay in touch and let me know his 25(OH)D and his progress. You have my cell phone number, call me whenever you have questions. Sincerely, John Cannell

Dear Dr. Cannell:

I have a 19 year old boy with autism. I include a brief summary of Jake’s development with the hope of helping with his data collection. I have tape from before the vitamin D and I will tape Jake now so we can have video proof of this amazing change. And, oh yes, don't give up on the adults. My favorite saying is "everyone can always do better."

Jake is a 19 year old young man with regressive autism, having been born perfectly normal, and actually progressed ahead of schedule until a series of ear infections, oral antibiotics, immunizations, and an exposure to the wild virus strain of chicken pox caused Jake to suffer a loss of language, eye contact, joint attention, behavioral self-modulation, and a general ability to verbally communicate his needs, problems, and pain. He developed a severe and persistent gastrointestinal overgrowth of yeast, alternating constipation and diarrhea, food allergies, seasonal allergies, enterocolitis, and lymphoid hyperplasia, that could be so painfully debilitating that it caused him to cry and scream, try to find physically comfortable positions, and miss many days of school.

Jake has been maintained on a strict casein and gluten free diet for 6 years, with variable and minor improvement. He continued to battle chronic yeast overgrowth, clostridia, and alternating diarrhea and constipation, abdominal pain, gas, bloating, and failed to progress in terms of acquisition of social and language skills, to the degree it seemed he should. His tantruming, mood changes, and behavioral outbursts, in retrospect, were essentially all related to his state of bowel function and discomfort.

Treatments have been somewhat helpful, such as oral immunoglobulin, B12 injections, complex supplementation, however his progress has been at a standstill and his language has not had any major improvements in 7 years. Although he can express his most basic needs, conversation is extremely difficult for him.

I started supplementing with Vitamin D, 2000 IU a day, on April 15 and have increased his dose to 6000 IU a day just last week. It seemed that he was having a bit more language on just the 2000 IU but it was hard to tell. Last week, after he had been on 6,000 IU for several weeks, it seemed as if everyone began to notice. Just yesterday I received a call from his staff that was so excited to report that "Jake cannot stop talking".

We are seeing the same improvement at home. Not only talk but singing as well. The complex language is amazing, he asked me "why would you limit that" and when he told me he had a bad dream he said " I'm crying because I had a bad dream that I got sick and died". Prior to this I would have just assumed that he woke crying because his stomach was bothering him. He would have never been able to explain his problem in fact I didn't even realize he knew the concept of a dream. Today I increased his dose to 10,000 IU per day. I'll keep him on this dose for several weeks before running another level. His first level was 17 ng/ml.

Thanks again, Dr. Cannell, I'll keep you updated on his progress. With warmest regards, and gratitude for your work. Mary

Dear Mary:

Somewhere in a previous newsletter, I wrongly predicted (I hope) that older autistic subjects would not respond to vitamin D. Obviously, one case report does not prove the point but now I believe all autistic adults should start taking 10,000 IU per day immediately. My reasoning is simple, 10,000 IU/day will not harm autistic adults and it may help, it is just that simple.

Obtain a 25(OH)D in two months and adjust the dose as need to obtain levels of 80-100 ng/ml. Never have I been so glad that I was wrong.

Also, be it autistic child or autistic adult, if you want to bring your loved one to our new free clinic, but can’t afford the travel costs, maybe lifetime donors will allow some of their donation to be used for travel. I can certainly coach you via email and phone. It is not that difficult to get one’s vitamin D level into the high range of normal while avoiding excess preformed retinol.

Mary, you have my phone number, call if you have questions, and let me know his responses and the blood test results.

Sincerely, John Cannell
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See also Vitamin D Life

• No noticeable decrease in Autism in child with high level of vitamin D – July 2012
• Overview Autism and vitamin D which includes the following graph