
________________________________________________________________
Friday,
November 6,
2009
Vol. 13 No. 120
TREATMENT
The Ultimate Herbal Remedy: Can Cannabis Improve Autism?
Chelation Therapy Drug Found Safe and Beneficial for Children With
Autism
Are Doctors What Ails U.S. Healthcare?
Paging 'Dr. Google'
PEOPLE
Autistic Boy, 8, Saves Little Girl From Drowning at The Entrance
RESOURCES
New Resources for Parents of Autistic Children, Chattanooga
COMMENTARY
A Decade of Questioning Harm And The Autism-Vaccine Connection
How Wired Magazine’s Amy Wallace Endangers Our Kids
TREATMENT
The Ultimate Herbal Remedy:
Can Cannabis Improve Autism?
The debate over its risks has split political and scientific opinion in
Britain. But American mother Marie Myung-Ok Lee says cannabis isn't
only safe enough for her autistic son - it's dramatically improved his
condition
is.gd/4Pgr3
My son, J, has autism. He's also had two
serious operations for a spinal cord tumour and has an inflammatory
bowel condition, all of which may be causing him pain, if he could tell
us. He can say words, but many of them - "duck in the water, duck in
the water", for instance - don't convey what he means. For a time,
anti-inflammatory medication seemed to control his pain. But in the
last year, it stopped working. He began to bite and to smack the
glasses off my face. If you were in that much pain, you'd probably want
to hit someone, too.
J's school called my husband and me in
for a meeting about J's tantrums, which were affecting his ability to
learn. The teachers were wearing Tae Kwon Do arm pads to protect
themselves against his biting. Their solution was to hand us a list of
child psychiatrists. As autistic children can't exactly do talk
therapy, this meant using sedating, antipsychotic drugs like Risperdal.
Last year, Risperdal was prescribed for
more than 389,000 children in the US - 240,000 of them under the age of
12 - for bipolar disorder, ADHD, autism and other disorders. Yet the
drug has never been tested for long-term safety in children and carries
a severe warning of side-effects. From 2000 to 2004, Risperdal, or one
of five other popular drugs also classified as "atypical
antipsychotics", was the "primary suspect" in 45 paediatric deaths,
according to a review of US Food and Drug Administration (FDA) data by
USA Today. When I canvassed parents of autistic children who take
Risperdal, I didn't hear a single story of an improvement that seemed
worth the risks. A 2002 study on the use of Risperdal for autism, in
The New England Journal of Medicine, showed moderate improvements in
"autistic irritation" - but the study followed only 49 children over
eight weeks, which limits the inferences that can be drawn from it.
We met with J's doctor, who'd read the
studies and agreed: No Risperdal or its kin. The school called us in
again. What were we going to do, they asked. As an occasional health
writer and blogger, I was intrigued when a homeopath suggested medical
marijuana. Cannabis has long-documented effects as an analgesic and an
anxiety modulator. Best of all, it is safe. The homeopath referred me
to a publication by the Autism Research Institute describing cases of
reduced aggression, with no permanent side- effects. Rats given 40
times the psychoactive level merely fall sleep. Dr Lester Grinspoon, an
emeritus professor of psychiatry at Harvard Medical School who has been
researching cannabis for 40 years, says he has yet to encounter a case
of marijuana causing a death, even from lung cancer.
A prescription drug called Marinol,
which contains a synthetic cannabinoid, seemed mainstream enough to
bring up with J's doctor. I cannot say that with a few little pills
everything turned around. But after about a week of fiddling with the
dosage, J began garnering a few glowing school reports: "J was a
pleasure have in speech class," instead of "J had 300 aggressions
today."
But J tends to build tolerance to
synthetics, and in a few months we could see the aggressive behaviour
coming back. One night, I went to the meeting of a medical marijuana
patient advocacy group on the campus of the college where I teach. The
patients told me that Marinol couldn't compare to marijuana, the plant,
which has at least 60 cannabinoids to Marinol's one.
Rhode Island, where we live, is one of
13 states where the use of medical marijuana is legal. But I was
resistant. My late father was an anaesthesiologist, and compared with
the precise drugs he worked with, I know he would think marijuana to be
ridiculously imprecise and unscientific. I looked at my son's tie-dye
socks (his avowed favourite). At his school, I was already the weirdo
mom who packed lunches with organic kale and kimchi and wouldn't let
him eat any "fun" foods with artificial dyes. Now, I'd be the mom who
shunned the standard operating procedure and gave her kid pot instead.
I thought back to when J was 18 months
old. We were vacationing on the Cape, and, although he just had the
slightest hitch in his gait, I was sure there was something wrong. His
paediatrician laughed. I called back repeatedly until a different
doctor agreed to see us. J was taken in for emergency surgery, to
remove a tumour that was on the verge of inflicting irreparable damage.
Sometimes, you just have to go with your gut.
And yet, I still hesitated. The Marinol
had been disorienting enough - no protocol to follow, just trying
varying numbers of pills and hoping for the best. Now we were dealing
with an illegal drug, one for which few evidence-based scientific
studies existed, precisely because it is an illegal drug. But when I
sent J's doctor the physician's form that is mandatory for medical
marijuana licensing, it came back signed. We underwent a background
check with the Rhode Island Bureau of Criminal Identification, and J
became the state's youngest licensee.
+ Read more: is.gd/4Pgr3
• • •
Chelation Therapy Drug Found Safe
and Beneficial for Children With
Autism
The Autism Research Institute calls for further investigations into the
use of chelation therapy for individuals with autism
is.gd/4P5IT
PRNewswire - Two studies published by
the Southwest College of Naturopathic Medicine in the October issue of
BMC Clinical Pharmacology investigated the use of oral
dimercaptosuccinic acid (DMSA), a prescription medicine approved by the
FDA for treating lead poisoning, and used off-label in these studies
for treating heavy metal toxicity in children with autism.
In the investigations, DMSA was given to
65 children with autism (ages 3 -8 years) to determine its
effects. The researchers found that DMSA dramatically increased
excretion of several toxic metals, including a 10-fold increase in
excretion of lead. In terms of safety, the study found that there
was no adverse effect on standard safety tests, including no effect on
kidney or liver function.
Of greatest interest was a surprising
finding that DMSA therapy had a dramatic effect on glutathione
levels. Glutathione is the body's primary defense against toxic
metals, and it was very abnormal in children with autism.
Treatment with DMSA for only 3 days
normalized glutathione levels for at least 1-2 months in almost all
children.
DMSA therapy also had promising effects
on possibly reducing some of the symptoms of autism, including
improvements in language, cognition, and sociability. However, a
formal randomized double-blind placebo-controlled study is needed to
confirm those results.
The study was led by Matthew Baral,
N.D., Chair of the Department of Pediatric Medicine and Associate
Professor of Pediatrics at Southwest College of Naturopathic Medicine
(SCNM) and James B. Adams, Ph.D., Adjunct Professor in the Division of
Clinical Sciences at SCNM and Science Director for the Autism Research
Institute.
"Toxic metals are a common problem in
autism, and I have personally observed that many of my patients with
autism have greatly benefited from DMSA therapy.
I hope this data answers the question
that many physicians have: whether chelation is safe and
effective, and clearly it's both," says Dr. Matthew Baral. "This
study shows that DMSA therapy is safe and effective, and should be
considered as a possible treatment for children with autism who have
significant body burden of toxic metals," says Prof. James Adams.
This study was funded, in part, by the
Autism Research Institute. To access the studies go to
www.biomedcentral.com/1472-6904/9/16
www.biomedcentral.com/1472-6904/9/17
• • •
Are Doctors What Ails U.S. Healthcare?
By Chris Baltimore is.gd/4PgeE
Reuters - Nowhere in the United States
has more doctors at its beck and call than White Plains, one of the
wealthiest cities in the nation.
Doctors have been flocking to the area
and surrounding Westchester County since the 1970s, drawn in part by an
upper-class clientele who demand top-notch medical care and have the
means to pay for it. The county has one of the highest median household
incomes in the nation (about $77,000 a year in 2007), and the figures
soar above six digits in suburbs like Scarsdale and Chappaqua, which
former President Bill Clinton calls home.
Nearly 3,000 miles (4,830 km) away,
scaring up a doctor in Bakersfield, situated in California's
economically battered Central Valley, is a lot harder. In fact, White
Plains has more than twice the number of doctors per capita as
Bakersfield, where needy patients until recently had to take a 2-hour
bus trip to Fresno to see a diabetes treatment specialist.
Two decades worth of U.S. healthcare
data analyzed by Dartmouth Medical School at Reuters' request shows
that such regional disparities are increasingly creating a nation of
health-care haves and have nots.
The research also suggests that the
chasm between places like White Plains and Bakersfield is likely to
grow - a point underscored by dozens of interviews with doctors and
experts. That's because physicians, the data shows, gravitate toward
affluent locales in the United States that already have all the medical
help they need.
What's more, the Dartmouth analysis
shows, clusters of doctors tend to result in higher health care costs -
and, perhaps most surprisingly, outcomes aren't any better in cities
with the largest physician populations.
Congressional Democrats in late October
unveiled a sweeping healthcare overhaul that would transform the
insurance market, extend health insurance to 46 million additional U.S.
patients and levy new taxes on the rich.
The House of Representatives could vote
as early as Saturday on a bill that would launch the biggest changes to
the U.S. healthcare system since the creation of the Medicare health
program for the elderly in 1965. But Senate action is unlikely until
next year.
President Barack Obama has made reform
of the $2.5 trillion U.S. healthcare industry, which constitutes
one-sixth of the economy, his top domestic priority.
Yet, even if Obama gets everything he
wants in his bruising fight with Republicans, stunning imbalances will
remain in how the fruits of the health care system are distributed.
Access to top doctors, cutting-edge
procedures and advanced life-saving technology has less to do with need
and more to do with quality of life issues that any professional would
consider when deciding where to live - climate, schools, and perhaps
most importantly, income.
Irrational Distribution
Consider this fact: The number of
primary care physicians per capita varies by a factor of 2.5 across
U.S. hospital districts, and specialists by more than three-fold,
according to Dartmouth. For every doctor who lives and practices in an
underserved area, four others settle in an overserved area, the medical
school's data shows.
There's an "irrational distribution" of
the most valuable and expensive U.S. health care resources and
"physicians simply do not settle in greater numbers where patient needs
are greater," said David Goodman, director of health policy research at
the Dartmouth Institute for Health Policy and Clinical Practice.
Neonatologists don't set up practice
where the need is greatest, and cardiologists don't flock to cities
with high rates of acute myocardial infarction, Goodman said.
+ Read more: is.gd/4PgeE
The
Autism Community
Supports the
Schafer Autism Report
• • •
Paging 'Dr. Google'
By Anna Tong, Sacramento Bee. is.gd/4PgNx
A video of a cheerleader supposedly
crippled after getting the H1N1 flu vaccine has received almost a
million hits on the Internet.
It's driving doctors crazy, as they
insist the vaccine is safe and anti-vaccine preachers are plain wrong.
But the H1N1 story is evidence of a
broader trend: The public's appetite for Internet health information
has fundamentally altered the doctor-patient relationship.
Doctors are no longer perceived as the
only authority on health information.
"People don't have that kind of
patriarchal relationship with their physicians anymore," said Dr.
Maxine Barish-Wreden, who heads California health-care provider Sutter
Health's integrative medicine team. "They come in, and they're armed
with some data already."
Almost all U.S. physicians said in a
survey that at least some patients bring to appointments health
information they found online, according to the Manhattan Research
Group, a company that researches health care trends.
Sometimes it means those precious few
minutes with the doctor can be spent setting the patient on the right
track.
"There's such a fine line between
somebody who's well-informed and somebody who's misinformed," said
Diane Chan, a pediatrician at Kaiser's medical center in Roseville,
Calif. "Because then I have two jobs: One, to convince you you don't
have a disease that you think you do, and then to diagnose you with the
right thing."
Sixty-one percent of Americans look
online for health information, the majority of whom say their last
search had an impact on medical decisions, according to a 2009 survey
from Washington, D.C.-based Pew Research Center. The research group
dubbed them "e-patients."
Evelyn Meletlidis of Roseville said she
looks up health information online every day because she has an
autistic 4-year-old. She belongs to Internet groups for parents of kids
with autism. Members trade tips on everything from diets to
vaccinations.
Her choice not to continue vaccinating
her son was a decision made after extensive research online and
offline, she said, and one not welcomed by doctors.
"I've been literally kicked out of
offices because I won't vaccinate my child," she said.
But despite all the online information,
Pew researchers also found the Internet hasn't replaced doctors.
+ Read more: is.gd/4PgNx
• • •
PEOPLE
Autistic Boy, 8, Saves Little Girl
From Drowning at The Entrance
is.gd/4PfnT
A boy, 8, has been hailed a hero for
saving a little girl from drowning.
What is even more remarkable is that
rescuer Matthew Kennedy is autistic.
But he leapt into The Entrance pool on
Sunday afternoon to save Emily Gold, 3, of Killarney Vale.
Matthew had just arrived at the pool,
otherwise known as the Ocean Baths, about 4.30pm with his parents John
and Karen and his two brothers and sister.
He was the first in the water and saw
Emily struggling and kicking to stay above the water.
“I could see she was in trouble and that
I had to help,” Matthew said.
“I jumped in the pool, grabbed her arms,
lifted her head above the water and pulled her out of the pool,” he
said.
Emily, who was not wearing any flotation
device at the time, was unconscious and foaming at the mouth.
“There was no response from her and
people at the pool were frantic and screaming,” Mrs Kennedy said.
Mr Kennedy and the pool lifeguard
immediately began performing CPR.
After a few minutes, Emily began to
breathe again. The Entrance lifeguards arrived soon after followed by
an ambulance, which took Emily to Gosford Hospital’s emergency ward.
Surf Life Saving Central Coast director
Stuart Harvey said if it was not for Matthew’s immediate actions, Emily
would be dead.
+ Read more: is.gd/4PfnT
• • •
RESOURCES
New Resources for Parents of Autistic Children, Chattanooga
By David Carroll. is.gd/4PfEu
WRCB - From humble beginnings, parents,
staffers and volunteers with the Chattanooga Autism Center hope to grow
into something big; a one stop location providing hope and answers for
parents of autistic children.
Alyce Benson, Licensed Clinical Social
Worker with the Team Centers of Chattanooga, says, "They can come in
during the day, access our computers, and talk with our autism
coordinator who can provide information and resources."
She says most people don't know about or
understand autism until they spot the signs in a child. There's no easy
definition, but some of the more common signs include speech problems,
poor eye contact, repetitive behavior or unusual sounds and movements.
When parents get the diagnosis, they
need help dealing with and understanding the repercussions.
Benson says, "We hear from them, they're scared, they say their world
is falling apart, and they don't know how to pull it back together."
The stress has proven to be overwhelming
for some, and one-on-one assistance can be hard to find. That's why the
Autism Center has the potential to bring a brighter outlook through
mentoring, support and education.
+ Read more: is.gd/4PfEu
• • •
COMMENTARY
How Wired Magazine’s Amy Wallace
Endangers Our Kids.
By J.B. Handley on Age of Autism. is.gd/4P1o5
Wired Magazine’s recent cover story on
autism, written by Amy Wallace, is titled “An Epidemic of Fear: How
Panicked Parents Skipping Shots Endangers Us All.” here: is.gd/4P1nf For any reader
hoping for an unbiased, objective discourse on the current state of
autism research, the title alone tells you that won’t be happening.
Ms. Wallace’s piece is, in fact, a
glowing portrayal of one man, Paul Offit, and his relentless pursuit of
the idea that vaccines simply cannot have anything to do with the
autism epidemic, since the autism epidemic doesn’t even exist, and
vaccines have been proven not to cause autism, and vaccines are much
more good than bad, so let’s get on with it already.
As someone who has studied Mr. Offit’s
talking points closely for the past 5 years, I was struck by how
closely Amy Wallace seemed to echo the points that Offit frequently
makes in both the press and medical journals, not only on the specific
scientific questions that have and haven’t been answered surrounding
many aspects of autism, but even on the more psychoanalytical questions
surrounding WHY parents do the things they do (like avoid vaccines). In
fact, I can’t find a single original thought or idea in the article
from Ms. Wallace that I haven’t previously heard Paul Offit say, nor a
single case where her ideas appear to deviate or disagree with any of
the positions he takes or has taken in the past: Amy Wallace and Mr.
Offit appear to be in perfect harmony.
Ms. Wallace also violates, quite
clearly, her own ruminations (which I have heard Offit discuss before)
about the reticence required in discourse and debate by true
“scientists” that us non-scientists don’t have to abide by: “But
researchers, alas, can’t respond with the same forceful certainty that
the doubters are able to deploy — not if they’re going to follow the
rules of science.” As you will see in a moment, Ms. Wallace’s writing
is in fact filled with this “forceful certainty”, starting with the
cover of Wired Magazine that states, quite forcefully and most
certainly, “Vaccines Don’t Cause Autism."
You see, Ms. Wallace gives the reader
the strong impression that she is one of them, the scientists, someone
who knows what the science does and doesn’t say and who knows that this
silly debate -- that vaccines may cause autism -- is a debate who’s
time has past, because, you know, the science shows us that.
One of the oddest things about Ms.
Wallace’s article is the characters she allows into the debate to
highlight the two sides of this conflict and tell her story. In one
corner, and the corner where she spends most of her time, is Paul
Offit, a doctor. He is joined by “science”, an omnipotent force, and a
force that in Ms. Wallace’s world always agrees with Offit’s points
(and hers, since they’re the same points). In the other corner, the
corner that us lowly anti-vaccinationists have been relegated to, she
shows only civilian parents: Jenny McCarthy, Barbara Loe Fisher, and
Curt Linderman. Three parents. No doctors. No scientists. Like the NY
Times, it’s parents vs. research. Where’s our science? In the world Amy
Wallace creates, it doesn’t exist.
When it comes to facts, particularly the
facts that matter most in the debate over autism, I believe Ms. Wallace
fails miserably, and in many cases she simply states things that are
unsupportable or quite simple to prove as untrue. I hope that this
discourse, by focusing on the very specific things that Ms. Wallace
wrote and the ACTUAL state of science in the autism world, will cause
Ms. Wallace to correct her one-sided article, so that parents who read
Wired Magazine will have a more accurate portrayal of the current
reality of our understanding of autism.
+ Read more: is.gd/4P1o5
• • •
A Decade of Questioning Harm
And The Autism-Vaccine Connection
By Shelley Hendrix Reynolds
huffingtonpost.com. Shelly is the co-founder of Unlocking Autism. is.gd/4P2fO
It's hard to run a marathon that pushes
you harder than you have ever been pushed -- physically, emotionally
and spiritually. One for which you did not train or set out to run but
one that you just woke up to find yourself running one day. One that
challenges your endurance with every step.
What happens when you turn your head to
see how far you have come only to realize you have been jogging in
place?
For over a decade, I've relentlessly
searched for answers to the connections I believe exist between my
son's autism and vaccines he received. Historically, autism has been
considered a genetic condition so I am constantly told I just imagined
things. Surely his autism was always there...always evident...from
birth. Liam must not have been engaged the way that I remember prior to
that summer when he received his MMR. He didn't really play peek-a-boo
with me. He didn't really talk. He just disappeared at the same time he
got his shots but the vaccines didn't do it.
It was coincidence. Coincidence is not
the same as causation.
None of those people lived in my home.
None of those people knew my child personally when he was a baby. None
of those people saw my bright-eyed son disappear into the abyss of
autism right before them.
Recently, I dusted off an old videotaped
copy of a story that aired on CNN in October 1999 called "A Question of
Harm?" - the first nationally televised piece linking a vaccine to
autism. I hadn't watched it in a long time. It's painful for a number
of reasons. But I took a deep breath and pressed play.
The memories came flooding back. Liam
was fine before his MMR and severely affected after.
Eleven years ago, frantic to sound an
alarm, I called every network, begging them to help us ask this
question -- to warn parents. CDC statistics in 1998 demonstrated one in
every 500 children with autism, a staggering increase from one in
10,000 in ten years. No one would listen.
Their response? "We already did a story
on autism this year. Sorry."
But Julie Powell, a CNN producer,
stepped up. She took a big risk. 15 months later she, and correspondent
Linda Patillo, bravely let America and thirty-three other countries
know there just might be a question of harm with vaccines for some
children. They helped us ask what if.
What if a potential connection exists
between vaccines and the development of autism?
Here is their segment.
Part One: is.gd/4P2zh
Part Two: is.gd/4P2GN
When I look back over the decade,
I see enormous progress in Liam's development. He is now in a sixth
grade classroom, unassisted except for a modified curriculum -- making
good grades. He is sweet, gentle, thoughtful and caring. He has an
enormous appetite for learning and a hope for his future. He has a
social life complete with a girlfriend, a Facebook account and a cell
phone. He just tried out for the basketball team. He lights up every
room he enters. He is an inspiration to me, loved by anyone who knows
him.
Liam is my Gatorade. He keeps me running
when I get light-headed and dizzy. He is my coach. He is my cheerleader.
But when I look back over the last ten
years of the autism/vaccine controversy -- or just the safety of
vaccine in general, especially from the perspective of the media, I
don't see the same progress. The media has not advanced the ball
following this developing story in the way I had hoped.
As I replayed the tape, I thought this
could have been filmed today, in October of 2009, in any other three
year old's house. Today's media repeats the script Julie developed but
includes new faces. Child is fine. Child gets vaccine. Child develops
autism. Parents cry. Child stares into space then cut to scene of child
stacking blocks with his therapist. Doctors still say we don't know
what causes autism, except now they affirmatively add -- "but it's not
vaccines." Parents rally. Government officials still tout the safety of
all vaccines. Health agencies are still trying to figure out how many
kids with autism there are out there. Doctors are better at diagnosing,
or maybe not. They don't know. Congress is still holding hearings on
the issue. Parents still wonder when someone will answer their
questions.
Fade to black.
I wondered -- where are the brave
investigative journalists we need to ask these hard questions?
There are a couple that will pick up the
ball like David Kirby or Sharryl Atkisson but the majority of the
reporters that cover these stories are like Amy Wallace, entertainment
reporter for Wired Magazine, who, in my opinion once again does not
question what she is told, she just regurgitates the propaganda she
receives from the vaccine industry and industry supporters. Or Nancy
Snyderman who tells us it is not our job to question the safety of
shots and to "just get the damn vaccine!"
In the meantime, while we wait for
mainstream media to really honestly take a look at these questions,
thousands of families, a few politicians, a handful of researchers and
doctors across the United States work hard to sound that alarm. These
people keep this issue burning bright in the media even when the
medical community tells everyone to look away from the light. Vaccines,
and their risks, are touched on in a variety of news mediums.
Time marches on and the mainstream media
continues to follow that recipe handed down 10 years ago.
Where CNN delivered fresh journalism in
1999, stories today are stale, even moldy. Generally speaking, the
media doesn't dig. They do not do their job and ask the questions that
make government officials, PhRMA spokespeople or the American Academy
of Pediatrics squirm. Now that's entertainment, Amy.
Here are some questions for the White
House Press Corps the next time they attend a briefing regarding Swine
Flu.
"President Obama, can you please explain
why HHS, along with the local and federal law enforcement agencies
would not allow a person to pour Thimerosal (an ingredient in some
vaccines which contains ethyl-mercury) onto the stone plaza outside the
HHS building in protest because it is classified as hazardous waste?"
"Did you know if the amount of
ethyl-mercury in one dose of a Thimerosal containing H1N1 vaccine were
spilled on the ground HazMat would be required to clean it up?"
+ Read more: is.gd/4P2fO
Note: The opinions expressed in COMMENTARY are those of the author and
do not necessarily represent the views of the Schafer Autism Report.
• • •
LETTERS
Re: The Horse Boy: Autism, Unfortunate. So Is the Movie
As the review stated, not many people
could go to Mongolia to try and cure their child's autism, let alone
fund a movie that just might also enhance the parents' professional
standing.
Imagine if one parent had decided that
they could spend a lot of time with Rowan at the nearest stables;
imagine buying him his own horse or pony; the trajectory of his healing
may have been beyond the parents' imagination.
Any of these, less costly options than
Mongolia, might be open to other determined parents.
We seriously need to think about the
most effective, economical, most intense and fastest route to helping a
child with autism. Having found at least one clue to helping one child
is awesome. Let's not lose sight of our children being the future, not
our own careers.
Actions speak louder than words.
- Helen R.
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