Vitamin D and autism

[Guest guest]

Very interesting post! My children always do better in the summer months. Note

that autism, MS and other diagnoses are more prevalent in the colder states.

But, also take note that Vitamin D is linked to bacteria. I have read reports

that those with chronic bacterial infections have low Vitamin D. Low Vitamin D

could also be why some crave milk. Anyhow, this is interesting, and we need to

realize how important the sun can be in helping our children, and look into

Vitamin D levels. There are some who feel Vitamin D is detriment. I guess it

depends upon your treatment protocol. I choose to supplement Vitamin D, because

I like doing what seems natural.

Love and prayers,

Heidi N

The Vitamin D Newsletter

January 30, 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

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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 an

xiety-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 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 .

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_

(http://list.netatlantic.com/t/50528880/91420311/124071/0/) . 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 '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_

(http://list.netatlantic.com/t/50528880/91420311/124071/0/) 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.

Cannell, MD

Executive Director

Vitamin D Council

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