Vitamin D Council's Newsletter on Autism

barbara

Pioneer Founding member
This is off topic, however, this group is non profit so I am willing to post it. If any parents of autistic children would care to comment, please do so.



The Vitamin D Newsletter

More letters on autism

February 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 want to unsubscribe, go to the end of this newsletter. If you are not subscribed, you can do so on the Vitamin D Council's website.

This newsletter may be reproduced as long as you properly and prominently attribute its source. Please reproduce it, post it on Internet sites, and forward it to your friends.

Below are three more letters I received in response to my last newsletter:

Dear Dr. Cannell:

My nephew was showing signs of delayed development : delayed speech, a slow tongue, rarely smiled, shy, loner, unusually uncommunicative for a toddler. He just seemed sad. After evaluation and confirmation of the abnormalities particularly the poor neuromuscular control of his lower face and tongue, he was enrolled in speech therapy several times a week with some improvement over 6 months or so but he still spoke in one word sentences.

His mother kept him perpetually in sunscreen and sunscreen fabrics and hats with flaps. As he approached his third birthday, I convinced my sister-in-law to try him on some Vitamin D. As he was about 43 lbs (big, not overweight), I told her to give him 2000 IU per day and sent her a bottle of drops to make it easy (2000 IU/day). Six wks later, they came up to our home to go sledding this past December.

They both were ecstatic about the change in him. He was now speaking in complete complex sentences, was smiling, out-going and had finally begun to become toilet trained. She was delighted with the effects but she confided that she was having trouble giving him the Vitamin D, no matter what she put it in; he often refused to eat it. I found this inexplicable, how hard could it be to get one drop into him?

It quickly became apparent that she had been trying to give him one DROPPERFUL per day, roughly 60,000 to 150,000 IU per day, flooding his system with D. She has dropped the D down to 2000 IU/day pending a blood level but he will never be without adequate D again. As they were leaving, he said "Mommy is going to back the car up and then we get in?" His father keeps happily exclaiming that he is a whole new kid.

Dr. Marisa Burrows,

New Hampshire

Dear Dr. Burrows:

Dr. Gene Stubbs, a child psychiatrist from the Oregon Health Sciences University told me of a similar case, accidental Vitamin D overdosing leading to dramatic and rapid improvements in autistic symptoms. However, even if your nephew took 150,000 IU/day for six weeks, I doubt he will be clinically toxic; but he may have high blood calcium, the dose was dangerous. Remember, from 1955 to 1990, every child in East Germany got 300,000 IU at their doctor's office every three months until 18 months of age. I predict the autism epidemic started later in East Germany's former lands (mid 1990s) than it did in the USA (mid 1980s).

Stop all Vitamin D until his 25(OH)D level is around 80 and then restart at 3,000 IU per day, attempting to obtain a level of 80-100 ng/ml, year around. You may notice a rebirth of his symptoms as his 25(OH)D falls precipitously but I believe that his symptoms will again disappear again if you maintain his level in the high normal range.

Dear Dr. Cannell:

I was disappointed to read some of your statements in your latest newsletter regarding autism, although I am quite convinced that Vitamin D deficiency plays a key role both in the development and the continued symptoms of autism.

However, you seem to imply that most, if not all, autistic children could be solely treated and even cured by nothing but Vitamin D. I have two autistic children, a girl age 21 months and a boy age 3 1/2 years, who both tested as Vitamin D deficient (among other things,) and we have been supplementing them with 1,000 IU for the 21-month-old and 2,000 IU per day for the 3-year-old. They have been on the vitamin D for six months. Both of them are now at sufficient levels--74 and 87 ng/ml, respectively--and yet I assure you, while they have improved, they are still very much autistic.

They also take Vitamin A in their powdered multivitamins, including 3,500 IU per day of retinyl palmitate. They've never received a large dose of vitamin A (or anything else) in our DAN doctor's office.

You do a huge disservice to the community when you say,

"The "all autism is caused from vaccinations crowd cannot accept the Vitamin D possibility as it threatens their core beliefs. They simply cannot change their minds."

I would submit that the "all autism is caused by any one thing" crowds are all wrong, and that includes the Vitamin D crowd. I simply cannot change my mind that my daughter's vaccination caused her autism because I watched it happen, starting the very day she received her shot. On the other hand, my son's development did not include a single, major regression following a vaccine, and I know his etiology is completely different and was not caused directly by a vaccine.

Many autistic children show improvement with their Vitamin D supplements, just as they show some improvement with other supplements as well. The woman in your newsletter whose son showed such a complete turnaround with just one supplement is lucky to have found her major puzzle piece. But biomedical parents in the autism community struggle with skepticism enough as it is, and we need to be coming together to find each child's different set of puzzle pieces, not pointing fingers at each other.

Sincerely,

Mary Nelson,

San Jose, CA

Dear Mary:

Your children have subclinical vitamin A toxicity, which blocks the effect of Vitamin D. The 3,500 IU of preformed retinol they are taking would be as if I were taking 25,000 IU of preformed retinol a day. It may take years for the toxic amounts of vitamin A to be removed from their system because, unlike vitamin D, the body has no good system to remove vitamin A quickly.

Vitamin A competes with vitamin D directly at the receptor site. When vitamin A levels are too high, the two retinoic acid molecules bind to each other instead of one vitamin A molecule binding with one vitamin D. When the two vitamin A molecules bind with each other, as occurs with high doses of vitamin A, the two vitamin A molecules then bind to the Vitamin D receptor and weakly stimulate the receptor, and may act as a weak agonist. But, weak agonists block the function of receptors, preventing the vitamin D from working.

Many DAN Doctors use Vitamin A, either as a large bolus dose or the in the powdered multivitamins your child is taking. As such, I predict DAN treated children will be less responsive to Vitamin D until their Vitamin A toxicity clears. For more on the dangers of Vitamin A, see the last part of the paper below, written by 16 experts, warning of the dangers of Vitamin A.

http://www.vitamindcouncil.org/PDFs/cannell-et-al-vitamin-d-deficiency-epidemic.pdf

Indeed, a recent Cochrane Review found that vitamin A supplements increased total mortality rate by16%.

Bjelakovic G, Nikolova D, Gluud LL, Simonetti RG, Gluud C. Antioxidant supplements for prevention of mortality in healthy participants and patients with various diseases. Cochrane Database Syst Rev. 2008 Apr 16;(2):CD007176.

I would stop all vitamin A and increase the Vitamin D to 2,000 IU/day for the 21 month old and 4,000 IU/day for the 3-year-old until your children have 25(OH)D levels around 100 ng/ml, which is perfectly safe, and keep their levels that high for the rest of their childhood. By that time, my prophecy will be fact.

Dear Dr. Cannell:

You said the "all autism is caused from vaccinations crowd cannot accept the Vitamin D possibility as it threatens their core beliefs. They simply cannot change their minds."

How does Vitamin D deficiency explain an autism epidemic starting about 1990? How does your sunshine/Vitamin D theory of autism explain the absence of autistic children with rickets working all day long in the sunless factories of Victorian England? Since the current aggressive vaccination schedule has never been tested for safety against a less aggressive one, how can you so smugly deride the possibility of the damage from it? How do you explain the recent studies showing clusters of autism in California with higher rates among parents with higher education?

How open-minded are you about your own "core beliefs"?

Thomas R. Widden,

Professor Emeritus,

Bay State University, Maine

Dear Professor Widden:

The autism epidemic began in the mid 80s and tracks the sun -scare very closely, as it does the sale of sunscreen.

The neuropsychiatric symptoms of rickets have never been studied in the modern era, as, once the diagnosis of rickets is made all attention is paid to bones and the rickets is aggressively treated. However, as far as the mental condition in rickets, at least two old papers have addressed it, both published before the diagnosis of autism was common.

Hallerhan, M.M. The Effect of Rickets on the Mental development of Young Children. Archives of Psychology, July, 1938 vol 229, pp 1-67.

Gilmour A. The Mental Condition in Rickets. School Hygiene 1912;9:222 pp 6-16

Both papers describe "weak mindedness, feeble minds, mental dullness, and unresponsiveness" as being common in rickets. Gilmour found delays in speech were common. Developmental delays were common in both papers.

Hallerhan reports previous authors found "withdrawal, and negativism" as well as "tantrums, selfishness, depression, and narrowing of interests." However, both authors report that the mental condition in rickets improves with Vitamin D; that is the Vitamin D improves the brain as well as the bones.

The controlled study by Hallerhan was conducted in 1938 where some control children, and not just the rachitic children, would have been on cod liver oil as that was a common hygienic practice in that day. In spite of that, differences were noted in verbal development and significant differences noted in motor development, mental development and social adjustment.

As far as "mass vaccinations," that is, giving multiple vaccinations all at once, you are correct that it has not, to my knowledge, been studied and may trigger autism in vitamin D deficient children. However, triggering and causing are two different things. Remember the co-occurrence of vaccinations and autism may reflect the fact that children are weaned from Vitamin D rich formula to the empty calories of juice, even breast fed infants get formula, around the time of their 12 to 18 month vaccinations, thus precipitously dropping their Vitamin D levels. Shopping malls are full of toddlers drinking my favorite toxin: pure, 100%, organic, fruit juice.

As for your final point, Professor Widden, I assume you are referring to Dr. Karla Van Meter"s study from the MIND Institute, just published.

Van Meter KC, Christiansen LE, Delwiche LD, Azari R, Carpenter TE, Hertz-Picciotto I. Geographic distribution of autism in California: a retrospective birth cohort analysis. Autism Res. 2010 Jan 4. [Epub ahead of print]

California Autism Clusters Linked to Parent Education, Not Local Toxins

Autism clusters tied to educated parents

The main finding was that college educated parents, especially women, had an increased risk of having a child with autism. Actually, this is not a new finding. As I discussed in my 2007 autism paper, this has been known since the early 1980s but was dismissed as being caused by ascertainment bias, or how you pick your samples. Dr. Van Meter's findings correlated well with CDC researchers who found a similar risk for the well-educated, findings that are difficult to dismiss as being entirely due to ascertainment bias.

Bhasin TK, Schendel D. Sociodemographic Risk Factors for Autism in a US Metropolitan Area. J Autism Dev Disord 2007;37(4):667-77.

What is known is the relationship between sun-avoidance and sun-block use, which is strongly correlated with higher education and socioeconomic achievement.

Robinson JK, Rigel DS, Amonette RA. Summertime sun protection used by adults for their children. J Am Acad Dermatol 2000;42(5 Pt 1):746-53.

Hall HI, Jorgensen CM, McDavid K, Kraft JM, Breslow R. Protection from sun exposure in US white children ages 6 months to 11 years. Public Health Rep 2001;116(4):353-61.

What a tragic sight, all those rich kids in LA, clothed from head to toe and lathered with sunblock by their highly educated mothers, banging their heads on the swing set while professors miss such obvious clues.

John Cannell, MD

Executive Director

Vitamin D Council

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pink7

New member
Autism and Vitamin D

I wish it was possible to improve all symptoms of ASD with just Vitamin D.I think a combination of Vitamins, probiotics and other Therapies can help children with Autism.Most parents of ASD children would try anything reasonable to help their children. I do give Vitamin D to my child but not in high doses.
 

barbara

Pioneer Founding member
I think Vitamin D is good for everyone to take. I know I don't get enough direct sunshine so I take 6000 IU's a day.

Here's another interesting article relating to autism. So often research can lead to unexpected outcomes or discoveries and this appears to be what has happened here.



February 3, 2010

An experiment is under way to develop a pill aimed at a genetic disorder that might unravel some of the mysteries of autism along the way.

Chances are you've never heard of the target - Fragile X syndrome - even though it's the most common inherited form of intellectual impairment, estimated to affect almost 100,000 Americans. It's also the most common cause of autism yet identified, as about a third of Fragile X-affected boys have autism.

Now a handful of drug makers are working to develop the first treatment for Fragile X, spurred by brain research that is making specialists rethink how they approach developmental disorders.

"We are moving into a new age of reversing intellectual disabilities," predicts Randi Hagerman, who directs the MIND Institute at the Univ. of California, Davis, a study site.

Fragile X, more common in males than females, ranges from learning disabilities to severe cognitive impairment, along with emotional and behavioral problems. The genetic defect disrupts a basic foundation of learning: How brain cells respond to experiences by forming connections between each other, called synapses. Those structures aren't destroyed - they're too immature to work properly.

"The process of learning is just that much more difficult but not impossible, because there's nothing wrong with the synapse," says Stephen Warren, an Emory Univ. geneticist who led the discovery of Fragile X's mutated gene.

The experimental drugs have an unwieldy name - mGluR5 antagonists (pronounced EM-gloo-ahr). But they aim to get the brain back on track by simply blocking an overactive receptor that plays a key role in weakened synapses. The goal is to strengthen synapses, to make learning easier and behavior more normal.

These are early-stage studies, beginning in adults to look for side effects. Specialists expect, if they work, any effect would be bigger in children's still-developing brains.

Scientists are watching closely because "this looks like a really promising pathway" for some types of autism, too, says Andrea Beckel-Mitchener of the National Institute of Mental Health, which, along with the patient advocacy group FRAXA, helped fund the underlying research.

Researchers don't expect a cure: Drugs can't turn back adults' decades of cognitive impairment, Warren cautions.

"I would be very surprised if this has some overwhelming rescue," he says, "but I think you can hope for at least some improvement."

In Alpharetta, Ga., 27-year-old Shawn Helbig is Emory's first test patient. He can read only small words, but first thing each morning Helbig races to swallow the experimental pill and cross off the day's dose on a special calendar. He's excited, his mother says, to be helping.

"I've always pushed him to be everything that he could be," says Sandy Britt, describing her son as higher-functioning, holding a part-time job at a pet store, for example.

Britt hopes for an easing of Helbig's ability to express himself, saying parents watch that frustration boil over into Fragile X's hallmark meltdowns.

"You look at anybody that's got Fragile X and you know they're there. It's like you ask them something and they kind of get lost in their thought," Britt says. "You still have people in this world that, when they see an adult that looks normal ... but they still have very childlike behaviors and sometimes very childlike responses, they poke fun."

What goes wrong in Fragile X? That mutated gene on the X chromosome shuts off production of a brain protein called FMRP. Boys are usually more affected than girls, because they have only one X chromosome while girls have two.

FMRP puts the brakes on other brain proteins. Among other things, its absence allows too much activity by that mGluR5 receptor. Some drug companies already had been exploring drugs to tamp down mGluR5 because it may play a role in anxiety, too.

Now in the Fragile X pipeline:

-New Jersey-based Hoffman-La Roche Ltd. just began a Phase II trial at Emory, UC-Davis and three other hospitals comparing its candidate to a dummy pill in 60 adults with Fragile X.

-Hagerman says results are due soon from Swiss drug maker Novartis AG's similar study in Europe.

-Massachusetts-based Seaside Therapeutics LLC - co-founded by Massachusetts Institute of Technology's Mark Bear, who made the mGluR5 link - is testing one drug thought to indirectly affect mGluR5 and will open trials of a more targeted one soon.

What's the evidence? The approach worked in mice bred with the Fragile X gene. More startling, when Hagerman gave a single dose of one experimental drug to 12 patients, she measured brain or behavior changes that lasted until the dose wore off in half of them.

Eye contact and language improved, Hagerman recalls; one young man even asked the nurse for a date. "That got us pretty jazzed."

Source: The Associated Press
 
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