Vitamin D Deficiency and Autism

[Randy]

This month, I dedicate the entire newsletter to a mother's lengthy case report of her autistic son. Other than name and place of residence, the letter was not edited.

Dear Dr. Cannell:

At age 2.5 years, between December 2007 and January 2008, my son experienced a fairly dramatic onset of symptoms that led to his diagnosis of autism. His symptoms (many of which we did not even know the terminology for at the time they first occurred) included:

--The inability to sleep at night, we would put him to bed at 8:00 or 8:30 p.m. following his normal bedtime routine

--Development of anxiety and refusal to leave the house even to do preferred activities

--Obsessive-repetitive questions and monologuing/run-on speech

--Sensory issues (refusal to wear jeans or any fabrics other than fleece, screaming hysterically at bath time, complaining and covering eyes in sunlight, covering ears for everyday noises that had not bothered him before (toilets flushing, pulling pots and pans from cupboards, etc.)

--Toe-walking

--Flapping and self-stimulating behaviors (repeatedly tapping his cheeks and eyes with all ten fingers, continually twisting up his fingers in pretzel-like configurations, holding objects in his peripheral range of vision and straining to see them from the corner of his eyes)

--Development of an unusual pattern of stuttering/vocal tic at the end of words,he would repeat the last sound/syllable,"I don't want to go to the store-or-or-or-or-or-or. It won't be fun-n-n-n-n-n-n-n." He would make sounds even in his sleep "n-n-n-n-n-n" or "s-s-s-s-s-s-s"

--Loss of muscle tone (stopped walking up and down stairs and began crawling/sliding instead, decline in balance and motor skills)

--loss of handedness (began switching left to right hand, after seeming predominantly left-handed)

--Marked increase in hyperactivity

--Frequent spacing out/unresponsive episodes

Our son and his twin sister were born at 36 weeks, 5 days on March 17, 2005 after four months of bed-rest. As early as their 8 week appointment, I mentioned to our pediatrician that we had concerns about our son's eye contact and social responsiveness (in comparison to his sister). I felt that I was having more difficulty bonding with him. We were told "don't worry, but don't wait" and were referred to our state's Early On intervention program. At the end of June a physical therapist and speech pathologist from our intermediate school district came to our home to evaluate our then 3 month old son and told me that he was doing just fine and that I was worrying too much. I agreed that by the time they saw him he had begun smiling and making better eye contact.

We didn't worry again about our son until fall 2006. He had walked just before his first birthday, but by 18 months+ he still seemed clumsy and prone to falling compared to his sister. We took him back to the intermediate school district for evaluation and were told that all of his development seemed to be in the normal range and that we shouldn't worry. We were advised that we could take him to music and gym classes to work on his coordination and told that we could pay for private physical therapy if we elected. We followed all of the recommendations.

For a year, we didn't notice any other changes until the sudden onset of symptoms listed above when he was 2.5 years. With the sudden onset of symptoms above, we took our son to see a number of specialists during the winter of 2008 including a neurologist (who diagnosed him with Asperger Syndrome), a psychologist (who diagnosed with autism), and a second psychologist who specialized in the treatment of autism (who diagnosed him with Pervasive Developmental Disorder Not-Otherwise-Specified). All three diagnoses are on the autism spectrum. He also began seeing an occupational therapist, a speech therapist, a behavioral specialist, and a DAN! (Defeat Autism Now!) doctor for dietary interventions. We saw a dramatic improvement by April/May of that year. Nearly all the symptoms on the list above had resolved. We assumed the improvements were due to diet but he started to go into the sun around that time. Our son slept well and spent many peaceful, happy and anxiety-free months during the spring and summer after turning three.

In mid-November 2008, I sent the following e-mail to the DAN doctor who had been helping us with our son.

"You saw our son Jonathan Switzer a few times regarding his autism diagnosis and diet issues, etc. He had a regressive period last winter from about December through April when his autism was diagnosed, then did pretty well all summer. Nursery school started off okay, too, but now he seems to be having another regression.  

Main symptoms:

--Great difficulty getting to sleep (fidgets for 2 plus hours most nights while he had been falling asleep easily for several months prior to that)

--Marked increase in anxiety (again refusing to leave the house even to do things he loves, frequently shaking/clenching and telling us "I'm scared)

--Onset of OCD-like behaviors (afraid to get hands dirty, get extremely upset if he gets even tiny drips of water on himself)

--Increase in self-stimulatory behaviors (flapping, fidgeting, noise-making)

--Frequent crying jags and telling us he's just giving up on everything

We have had other parents tell us that their kids on the spectrum have a worsening of symptoms during the winter months and we feel like we are observing this same pattern. We've done some reading about light therapy for depression/anxiety and to help correct disturbed sleep patterns and would like to give it a try for Jonathan.

Wondering if you have ever prescribed a light therapy box for pediatric patients before. Our insurance told us they will cover it with a diagnosis of Seasonal Affective Disorder, but I don't even know if that is something that can be diagnosed in children. Guess we're willing to try anything at this point. Do you know much about this type of therapy?"

Neither the DAN Doctor nor our pediatrician would write a prescription for a therapy light, so we purchased one on our own and found it made no discernible impact on his symptoms.

By December, our son's symptoms had worsened further and we decided to put him in a very expensive and intensive autism treatment program through our local hospital. He made slow progress during his participation in the program from January through April. He was also involved in speech and occupational therapy during the winter months. At his IEPC meeting at school in March, we were encouraged to put him in the district's program for children with developmental delays. We instead elected to register him for regular pre-school for the following year.

During that winter, I was crying to some friends about my son and describing his seemingly seasonal pattern of symptoms. We had just seen a second neurologist searching for help, and I was extremely frustrated when, after listening to my son's symptoms and history, he told me bluntly, "There is nothing seasonal about autism," then suggested that we put our son on an anti-depressant. We refused the medication. One of the friends I was crying to is a research librarian and the other is a medical researcher. After our conversation, they located and e-mailed me a few journal articles they thought might help, one of the articles was by Dr. Cannell and discussed his vitamin D theory of autism. Reading the article was one of those "Aha!" moments and I felt hopeful that Dr. Cannell was on to something.

By June our son was released from both speech therapy and occupational therapy and we were told that he no longer showed any delays for his age. When he had begun occupational therapy in January, the OT had been astonished at our son's lack of muscle tone. She recommended that he also receive Physical Therapy services, so we went on a long waiting list. Our initial OT was in a car accident, and in May we were transferred to a new OT. When the new OT first saw our son, she said could not believe he was the same child described in the notes. By May the low muscle tone, hyperactivity and distractibility noted in his file, were no longer evident. His turn came up for physical therapy and we were told he no longer needed it.

Our son has always spent a lot of time outdoors in the summer, without sunblock. He had a happy and relaxing summer. As fall/back-to-school approached, I began to fear the onset of another regression and again read the article by Dr. Cannell my friend had sent. I visited his website and decided we would try a vitamin D supplement. Our pediatrician did not encourage any dose higher than 400 i.u. (that found in a typical multivitamin) but did write a script to have his 25-hydroxy level tested. In August his level was 37, so we started him on 5,000 iu daily and had his level retested on October 21st. By October his level was 96. The pediatrician was concerned that this was too high and told us he should not have more than 400 iu per day.

Knowing that Nov-March are typically his worst months, we reduced the dosage down only to 3,000 iu from October through mid-December. At an appointment in December our son was doing wonderfully (none of his usual fall/winter symptoms yet evident) and the pediatrician told us 3,000 iu was too much and that we should be giving no more than 400 iu. In mid-December we reduced the dose to 1,500 iu. By the beginning of January we noted a marked loss of eye contact. We also noted that our son was again interchanging his right hand for writing and eating (after using his left hand exclusively for 8+ months). We increased his vitamin D level to 4,000 iu daily in early January. On January 11 we had his 25-Hydroxy level checked on January 11 and found that it was 89. By the end of January, we and his grandparents noted improvement in his eye contact.

In January 2010 we attended his preschool conferences. The teacher had marked cards with the following code (1=age appropriate, 2=developing, 3=area of concern). Our son received 1s in all areas with the exception of hopping on one foot and balance beam where he received 2s. We were told that he is on par with or ahead of his peers in all areas (academic, fine motor, etc.), and that his teacher had noted no unusual symptoms or concerns.

During the fall/winter 2009-2010 our son has been free from nearly all of the most troubling symptoms that plagued him the previous two winters. The following example may demonstrate the improvement in his daily life since last winter.

One of our son's low points was a Christmas party we attended in December 2008. Before leaving the house to attend the party our son screamed and yelled about having to take a bath and because we would not let him wear sweatpants to the party. He then begged us not to make him leave the house. During the 40 minute trip to the party our son asked us repetitive questions and talked incessantly. Upon arriving at the party, he immediately walked into an unoccupied room adjacent to the room where the party was occurring, and put his face into the corner. Despite much coaxing by my husband and me, he refused to come out of the corner.

After approximately 45 minutes of standing in the corner we managed to get him out through the promise of some food rewards. He proceeded to walk around and around the perimeter of the living room where all of the other kids were playing. He rubbed himself along the walls and covered his ears as he walked. He finally settled into playing alone in a corner of the room. All of the kids at the party participated in a book exchange. Our son refused to come to the area where the other kids were gathered. We coaxed him over only to have him throw the book he received and refuse to thank the parent who had purchased it for him. He spent much of the evening in time-outs for that and other inappropriate behavior.

In June of 2008, after playing in the sun for several months, we met for a picnic with the same group of friends at a local park. Our son ran up to the other children and joined right in playing bulldozers in the sand with them. He behaved and interacted in a completely appropriate and typical way during the picnic which lasted several hours.

This year (2009) we attended the same Christmas party at the same house. Our son got ready and left for the party without anxiety or incident. He chatted normally during the drive to the party. He walked into the house, said, "Hey, check out my new train," to some of the kids already playing and settled in to playing happily with the other kids. During the book exchange, he received a book, smiled and gave a big hug to the person who gave it to him.

In December of 2008, I took a leave from my job so I could get my son to the intensive behavioral treatment program he was in and to all of his other therapy appointments. I dedicated 40-60 hours per week to my son's various appointments and home therapy program.

This winter (January 2010), a former colleague asked me what Jonathan's current therapy program consists of. I told her I spend about 30 seconds each day opening the jar of vitamins and giving him his chewable vitamin D. In my opinion, the 3 minutes or so I spend each week giving him his vitamin D have been much more effective, and much less expensive, than any other treatment we have pursued.  

Thank you.

Jeannette, Wisconsin


Dear Jeanette:

You're welcome. Several things need comment. First, the symptoms are typical of autism. Second, the seasonality of symptoms suggest a vitamin D deficient disease. Third, the treatment in the spring of 2008 seemed effective but, in hindsight, it was simply due to spring sun exposure. Fourth, as you may now know, light boxes for seasonal affective disorder make no vitamin D. Fifth, your pediatrician knows little about Vitamin D other than what committees tell him; your decision to ignore his advice probably saved your son's brain from further injury, as autism is a progressive inflammatory destruction of brain tissue. Sixth, the fact that you needed bed rest and gave birth prematurely suggests you were Vitamin D deficient during your pregnancy.

Seventh, his twin sister has never had autism, despite the same intrauterine environment. This is consistent with my theory, that autism is caused from a quantitative, not qualitative, variation is one of the enzymes that metabolize Vitamin D. That is, there are no structural differences in these enzymes in autism, only a genetically determined difference in the amount present. These enzymes are responsive to estrogen; estrogen protects the brain from being damaged by low Vitamin D, probably by increasing the amount of activated Vitamin D present, explaining why boys are four times more likely to have the disease.

The report that your son deteriorated when his dose was reduced from 3,000 to 1,500 IU suggests autistic children need adult doses of Vitamin D. When you reduced the dose from 3,000 to 1,500 IU/day he worsened although his level on 1,500 IU/day was probably still greater than 50 ng/ml. This makes me think that dosage needs to be stable and suggests that Professor Reinhold Vieth's theory of a detrimental seasonal resetting of the intercellular metabolism of Vitamin D may even be true at levels above 50 ng/ml, where the body is storing the parent compound, cholecalciferol, in muscle and fat.

His current dose of 4,000 IU per day is perfectly safe and will give him a level of 80-100 ng/ml, inside the reference ranges of American laboratories. Toxicity (asymptomatic high blood calcium) begins somewhere above 200 ng/ml. Generally speaking, autistic children should take 2,000 IU per every 25 pounds of body weight for six weeks, then have a 25(OH)D blood test and adjust the dosage to get into the high end of the reference range, 80-100 ng/ml.

Although I first published the Vitamin D theory of autism theory 3 years ago, few autistic children are currently treated for their Vitamin D deficiency. This is due to several reasons. One, those who think, correctly, that autism is a genetic disease, stop thinking after that, reasoning that genetic diseases are untreatable. Such thinkers do not understand epigenetics (upon the genome). Vitamin D is probably the heart of epigenetics, as nothing works upon the genome like vitamin D.

Secondly, 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.

Finally, as you now know, organized medicine would say you should stop the vitamin D and watch your son deteriorate, which is why slavery to evidence based medicine is fine for scientists and unethical for practitioners.

John Cannell, MD

Executive Director

Vitamin D Council   Vitamin D council

[Randy]

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  found here

Autism clusters tied to educated parents  found here

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.   found here


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.    found here
 
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.    found here

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

[Randy]

April 2, 2010

Update on Autism and Vitamin D

This is a periodic newsletter from the Vitamin D Council, a non-profit trying to end the epidemic of vitamin D deficiency.

Swedish Researchers on the Right Trail

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 in Brugge, Belgium, ago 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 on 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 to 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.

Terry, Nebraska

Dear Terry:

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!

Terry, Nebraska
 
Dear Terry:

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