This weekend Julie Gerberding, the head of the CDC, appeared on Dr. Sanjay Gupta's show, House Call, and explained that vaccines can trigger autism in a vulnerable subset of children. This is the claim that parents like me have been making since at least the 80's, and have been dismissed and even mocked for making it.
But no one in the main stream media seems to have noticed. Not even CNN. Not even Dr. Gupta who was sitting right in front of her.
[Video updated 4/2/08]
Apparently, if you dress in soft pink and speak in dulcet, reassuring tones, you can indict yourself in the biggest international health crisis of the times and not even your interviewer will notice.
It is time for Dr. Gerberding to be forced to give cogent answers to the difficult questions that it is her responsibility to truthfully address. From all I have seen, it will take an act of Congress to do it.
I am joining Hannah Poling's parents in calling for the immediate release of the Poling case documents, and calling for congressional hearings into the autism cases in the Vaccine Injury Compensation Program.
Since the Poling's press conference three weeks ago, we have been hearing from health authorities like Julie Gerberding and Anne Schuchat that Hannah's mitochondrial disorder was genetic and rare.
David Kirby's most recent article let us know that the CDC has known since at least March 11th that Hannah's case is not at all rare, and famed The Cleavland Clinic here informs us that mito disorders are not all genetic, but can be caused by toxins.
Which leads us back to the same question as always in dealing with CDC officials... are they incompetent, or are they liars?
I have put the relevant pieces of information in bold.
Myth All mitochondrial diseases are known by acronym abbreviations (e.g., MELAS, MERRF, NARP, LHON).
Fact Acronyms were commonly used when these disorders were first described. Today, the naming of mitochondrial disorders is evolving. Mitochondrial disorders are currently named by any of the following methods:
* By acronym descriptions (still in use although most people with a mitochondrial disorder do not have an "acronymic-named" disorder) * By a name based on a person who described the disease * By a name based on a specific genetic mutation * By a name based on a microscopic description of tissue, or * By a name based on the deficient enzyme
It is important to note that the labels given this disorder do not, in and of themselves, predict the long-term outcome or alter treatment.
Myth Mitochondrial diseases are inherited only from your mother.
Fact The current thinking is that most mitochondrial diseases are the result of one or more complex inheritance patterns. Most mitochondrial diseases are the result of mutations (changes) in DNA located in the nucleus of the cell. Only mitochondrial disorders caused by mutations in the mitochondrial DNA (a specific structure in living cells, located outside the nucleus) are inherited exclusively from mothers.
Another source of mitochondrial disorders that affects a large percentage of patients is poorly functioning mitochondria that become that way because of:
* another disease process (including other chromosomal disorders) * exposure to toxins or viruses * other inherited genetic mutations that are not disease-causing until "triggered" by some other genetic factor
Myth Mitochondrial disease is a childhood disease.
Fact Although mitochondrial disorders are commonly seen in infants and children, they can occur at any age.
Myth An individual with mitochondrial disease has mental retardation, growth problems, and/or seizures.
Fact Only some individuals have these developmental problems. Patients' symptoms can range from extremely mild to severe, can involve one or more body systems, and can emerge at any age. The brain, muscles, heart, liver, nerves, eyes, ears, and kidneys are the organs and tissues most affected. Most patients' symptoms fluctuate over the course of their illness -- patients at some times experience no or few symptoms, and at other times have many and/or severe symptoms. Even family members with the same disorder can experience vastly different symptoms.
Myth Since mitochondrial diseases are incurable, no treatments can be given to these patients.
Fact Even though these disorders are long term and incurable, treatments are available. Early treatment of symptoms can reduce their impact and limit further disability. Avoiding certain medications and stressful situations that worsen symptoms is also helpful. Certain medications and supplements may improve mitochondrial disease-related symptoms -- just as they do for other incurable diseases -- such as diabetes and emphysema.
Myth Patients with mitochondrial disease all have elevated lactic acid levels in their blood.
Fact An elevated lactic acid level, along with other symptoms, typically does indicate a mitochondrial problem and requires further investigation. However, elevated lactic acid levels are not seen in all types of mitochondrial diseases. In making the diagnosis, your doctor will look for other signs of mitochondrial disorders in blood, urine, and spinal fluid samples.
Myth A muscle biopsy is the "gold standard" for diagnosis of mitochondrial disease.
Fact Although the muscle biopsy is a powerful diagnostic tool, it should not be considered a "gold standard." Examination of a biopsy includes microscopic evaluation, enzyme testing, and genetic testing. Although all U.S. labs that offer muscle biopsy meet strict laboratory guidelines, there is no agreed-upon standard approach for enzyme testing. Furthermore, a muscle biopsy with full analysis costs well over $10,000 and poses both surgical and anesthetic risks. In some patients, the diagnosis can be made based on clinical symptoms and a positive blood test (identifying a genetic mutation) or a combination of clinical findings and other non-invasive testing -- in either case, a muscle biopsy is not necessary. Finally, since biopsy results usually do not alter the long-term outcome or treatment considerations, some specialists and patients choose to treat without the need for a muscle biopsy.
Myth A muscle biopsy is a muscle biopsy no matter where and how it is done.
Fact Muscle removed for biopsy can be tested in many ways. For example, enzyme testing can be done on either ground-up muscle or on mitochondria extracted from muscle. Testing on extracted mitochondria is performed in only a few medical center laboratories and must be performed immediately. This procedure is known as a "fresh biopsy." In an alternative procedure, called a "frozen biopsy," the muscle is quickly cooled and stored at -80 degrees Celsius for testing at an outside facility. The scientific community is currently debating the advantages of testing "fresh vs. frozen" mitochondria. Some evidence indicates that the "fresh biopsy" may be the superior method. Other types of mitochondrial testing of the muscle biopsy may need to be conducted; a limited number of laboratories offer such testing.
For additional information on mitochondrial diseases, contact:
The United Mitochondrial Disease Foundation 8085 Saltsburg Road, Suite 201 Pittsburgh, PA 15239 412.793.8077 www.umdf.org
The Mitochondrial Medicine Society www.mitosoc.org
Of the thirty kids with regressive autism that were screened, 100% of them had the same biochemical imbalances as Hannah Poling.
All 30.
100%
Hannah is in no way, rare.
"The biochemistry of 30 children was studied intensively, and in each case, the results showed the same abnormalities as those found in Hannah Poling, participants said. Each child had moderate elevations or imbalances in the exact same amino acids and liver enzymes as Hannah Poling."
And... (I can't even believe that I am typing these words) on the conference call that Kirby is writing about the CDC was discussing adjusting the vaccine schedule to make it safer.
Keep reading...
UPDATE: Kirby offers bullet points to help us wrap our heads around all the info here:
I realize my Huffington essay was rather long and complicated. Here is a brief synopsis of just SOME of the larger points raised in the piece. I will probably alter this a little, but it hits most of the main topics. Please feel free to circulate - DK
● Up to 1 in 50 children (2%) may have a genetic mutation that puts them at risk for mitochondrial dysfunction.
● Up to 20% of all children with autism may have an underlying mitochondrial dysfunction
● Children with mitochondrial dysfunction are more likely to regress into autism between the ages 1 and 2 years, if they have fever or illness from viral infections or vaccines.
● The CDC is aware of this difficult situation and is taking measures immediately to address the current national vaccine schedule.
● The genetic susceptibility for mitochondrial dysfunction in autism is inherited through the father, not the mother, as previously thought, and is not rare at all.
● The DNA mutation might not be enough in itself to confer cellular dysfunction, and many doctors believe there is an environmental trigger as well.
● They note that thimerosal, mercury, aluminum, pollution, pesticides, medicines and prenatal alcohol exposure have all been shown to damage mitochondria.
● Other doctors believe that a corn-byproduct based diet in America has put children in a constant inflammatory state, thus making the DNA mutation more pathogenic.
● While some children with mitochondrial dysfunction regress into autism following fever and illness from a viral infection; other kids, like Hannah Poling, clearly regress following a reaction to vaccines.
● The exact percentage of people with vaccine induced autism is unknown. But even a 1% rate could mean 10,000 Americans with vaccine related autism, at a cost of many billions of dollars for lifetime care.
The Next Big Autism Bomb, Are 1 in 50 Kids At Risk? Posted March 26, 2008 | 09:30 PM (EST) David Kirby Huffington Post
On Tuesday, March 11, a conference call was held between vaccine safety officials at the US Centers for Disease Control and Prevention, several leading experts in vaccine safety research, and executives from America's Health Insurance Plans, (the HMO trade association) to discuss childhood mitochondrial dysfunction and its potential link to autism and vaccines.
It was a sobering event for all concerned, and it could soon become known as the Conference Call heard 'round the world.
The teleconference was scheduled by a little known CDC agency called the Clinical Immunization Safety Assessment (CISA) Network, a consortium of six research centers working on "immunization-associated health risks," in conjunction with the CDC's Immunization Safety Office and the health insurance lobby -- whose companies cover some 200 million Americans.
The hot topic of the day was mitochondria - the little powerhouses within each cell that convert food and oxygen into energy for use by the body. Recent news events have implicated mitochondria in at least one case of regressive autism, following normal development.
Some researchers on the call reported that mitochondrial dysfunction is probably much more common than the current estimate of 1-in-4,000 people. The potential implications for autism, then, are staggering.
"We need to find out if there is credible evidence, theoretically, to support the idea that childhood mitochondrial dysfunction might regress into autism," one of the callers reportedly told participants.
"THE CLOCK IS TICKING"
One person on the call (those interviewed for this article asked to remain anonymous) told me that, "the CDC people were informed, in no uncertain terms, that they need to look into this issue immediately, and do something about it." The clock is ticking, they were told, and if they don't respond, the information will be made public.
Still, the doctor said, he was enormously impressed by the "seriousness" with which CDC officials treated the possibility of a link between mitochondria, autism and possibly vaccines as well.
In the recent landmark Hannah Poling case, filed in Federal "Vaccine Court," officials conceded that Hannah's underlying mitochondrial dysfunction was aggravated by her vaccines, leading to fever and an "immune stimulation that exceeded metabolic reserves."
But on March 6, CDC Director Dr. Julie Gerberding claimed that Hannah's case was a rare, virtually one-of-a-kind incident with little, if any relevance to the other 4,900 autism claims currently pending in the court -- or to any other case of autism for that matter.(There were conflicting accounts about whether Gerberding was on the call or not).
Since then, however, Dr. Gerberding and other CDC officials were made aware of a Portuguese study, published last October, which reported that 7.2% of children with autism had confirmed mitochondrial disorders. The authors also noted that, "a diversity of associated medical conditions was documented in 20%, with an unexpectedly high rate of mitochondrial respiratory chain disorders."
"Apparently, the Portuguese study really got their attention," one of the participants said. "It's a highly significant finding. And it's worrisome enough to definitely look into. I think the CDC people know that."
They also know that some reports estimate the rate of mitochondrial dysfunction in autism to be 20% or more. And the rate among children with the regressive sub-type of autism is likely higher still.
Vaccine safety officials on the March 11 call may have been open to discussing mitochondria and autism, but they were probably highly unprepared for what was to come next.
One doctor reported his findings from a five-year study of children with autism, who also showed clinical markers for impaired cellular energy, due to mild dysfunction of their mitochondria.
The biochemistry of 30 children was studied intensively, and in each case, the results showed the same abnormalities as those found in Hannah Poling, participants said. Each child had moderate elevations or imbalances in the exact same amino acids and liver enzymes as Hannah Poling.
All thirty children also displayed normal, healthy development until about 18-24 months of age, when they quickly regressed into clinically diagnosed autism (and not merely "features of autism"), following some type of unusual trigger, or stress, placed on their immune system.
Researchers explained on the call that some data show that mitochondrial dysfunction can convert into autism "in numbers that make it not a rare occurrence," one participant told me. They explained this as "a distinct syndrome; not a mixed bag at all. Every kid had mild mitochondria dysfunction and autistic regression."
Another surprise came when one researcher announced an "inheritance pattern" that linked each case through the genetics of the father: In families where two cousins had autism, the genetic link was always through the father.
This unexpected discovery would clearly implicate nuclear DNA inheritance, and not mitochondrial DNA, which is inherited only through the mother.
Gerberding and others had previously insisted that Hannah and her mother, Teri Poling, both had the same single point mutation in their mitochondrial DNA. CDC officials asserted that Hannah had a pre-existing disease, a rare genetic glitch in her mitochondria, that may well have manifested as "features of autism" on its own, perhaps even without an environmental trigger.
"It's not in the mitochondrial DNA, and it's not rare," one participant confirmed. In fact, he said, many people probably carry the nuclear DNA mutation that confers susceptibility to mitochondrial dysfunction, they just don't know it.
1-in-50 GENETIC RISK?
On the call, speculation on the prevalence of a genetic mutation that could confer mild mitochondrial dysfunction in the general population ranged from about 1-in-400, to a staggering 1-in-50, or 2% of all Americans.
There was talk about the urgent need to do mapping studies, and find the locus of this gene. Some of the researchers said they want to test all 30 children for the actual DNA mutation. There was some expectation that they might discover that the mutation goes back generations, so parents and grandparents might be tested as well.
One belief is that a particular mutated gene may have become prevalent over the centuries, because of selective advantage. Mild mitochondrial dysfunction reportedly has been associated with intelligence, because it can increase activity of the brain's NMDA receptors. A large number of receptors can produce increased intelligence, but it can also increase risk of brain disease, one doctor explained to me. It's possible that increased receptor activity acts in same way.
But not everyone agrees that mitochondrial dysfunction is a purely inherited affair. Some researchers believe that, while a susceptibility gene for mitochondrial problems certainly exists, some type of environmental trigger, or "adversity," as one doctor put it, is needed to turn the mutation into a dysfunction.
The medical literature is replete with studies on mitochondrial health and the adverse impact of mercury, aluminum and other toxins. Even AIDS drugs like AZT and prenatal alcohol consumption can damage mitochondria and impact cellular energy.
The mercury-containing vaccine preservative, thimerosal, for example, "can definitely kill cells in vitro through the mitochondria," one teleconference participant told me. "And some people are beginning to suspect that the dose of hepatitis B vaccine given at birth might be interfering with proper mitochondrial function in certain children."
While the cause of mitochondrial dysfunction is up for the debate, so too is its potential effect on regressive autism.
All the researchers I spoke with agreed that, in many cases, there was an underlying, asymptomatic mitochondrial dysfunction, aggravated by some other stressful event imposed on the child's immune system, resulting in autism.
Such "metabolic decomposition" occurs when a child's system simply "cannot meet the energy demand needed to fight the stress of illness," one doctor explained.
But what causes the stress? That is a very big question.
Apparently, in only two of the 30 cases, or 6%, could the regression be traced directly and temporally to immunizations, and one of them was Hannah Poling. In the other cases, there was reportedly some type of documented, fever-inducing viral infection that occurred within seven days of the onset of brain injury symptoms.
All 30 of the regressions occurred between one and two years of age, at a time when the still-developing brain is particularly vulnerable to injury.
But if a significant minority of autism cases was caused by mitochondrial dysfunction aggravated by common childhood illnesses, then shouldn't we see fewer cases today than, say, at the beginning of the 20th Century? And wouldn't developing countries likewise show far more prevalence of autism than the United States?
Not necessarily, some experts said. They noted that many viral infections are still quite prevalent in modern-day America, and many children still get these types of viral infections about once a month, on average.
If that is the case, then why doesn't every child with "mito" dysfunction regress into autism? Surely, they must encounter viral infections during their yearlong window of neurological peril.
Again, not necessarily: Some doctors said it would depend on the severity of the dysfunction, the type of virus encountered, and perhaps other factors that are still not understood.
But at least two of the 30 kids with mito deficiencies were pushed over the edge into autism by their vaccines, and some researchers feel the number is probably much higher than that in the larger population.
"Vaccines, in some cases, can cause an unusually heightened immune reaction, fever, and even mild illness," one participant said. "A normal vaccine reaction in most kids would be very different in a kid with a metabolic disorder. We know it happened to at least two kids in this study, and I'm certain there are many more Hannahs out there."
One theory currently in circulation about what happened to Hannah and other children like her, is an apparent "triple domino effect." According to this hypothesis, it takes three steps and two triggers to get to some types of autism, and it goes like this:
STEP ONE: Child is conceived and born healthy, but with an underlying nuclear DNA genetic susceptibility to mitochondrial dysfunction, inherited from dad.
TRIGGER ONE: An early environmental "adversity" occurs in the womb or during the neonatal period, perhaps caused by prenatal exposure to heavy metals, pollutants, pesticides and medicines. Or, it occurs in early infancy, through environmental toxins, thimerosal exposure, or even the Hepatitis B vaccine "birth dose." This trigger results in:
STEP TWO: Child develops mild, usually asymptomatic mitochondrial dysfunction (though I wonder if the ear infections and eczema so common in these cases might also be symptoms of mito problems).
TRIGGER TWO: Child, now with an underlying mitochondrial dysfunction, suffers over-stimulation of the immune system beyond the capacity of his or her metabolic reserves. This stress is either via a viral febrile infection, or from multiple vaccinations, as in the Poling case. This trigger results in:
Such a scenario might help explain why autism has increased right along with the addition of more vaccines to the national schedule.
And it might help explain why autism rates are not plummeting now that thimerosal levels have been significantly reduced in most childhood vaccines.
It's possible that exposures from the flu shot, and residual mercury left over in other vaccines -- perhaps in synergistic effect with aluminum used as an "adjuvant" to boost the immune response - might "contribute to the toxic mix that causes childhood mitochondrial dysfunction in the first place," one of the doctors said.
But like many hypotheses, this one has competition. Some researchers believe that the modern American diet is largely to blame for an increase in the number of children whose underlying mitochondrial dysfunction is "triggered" into autism by febrile infections.
The answer, they hypothesize, is corn.
The American diet has become extraordinarily dependent on corn oil and corn syrup used in processing, these experts contend. They say that corn oil and syrup are inflammatory, whereas fish oil is anti-inflammatory. Could our diet be a factor in making this mutated gene become more pathogenic? It's a biochemical defect that leads to biochemical disease, supporters of this theory say: The gene itself becomes more of a problem.
WHAT NOW?
This information raises so many questions it makes your head swim.
First and foremost among them: What to do about vaccinating children with known mitochondrial dysfunction?
In many respects, these kids should be first in line for vaccination, to prevent some illnesses that might trigger an autistic regression during the window of vulnerability. On the other hand, with multiple vaccinations, such as the case with Hannah, there is also a risk of overtaxing the immune system, and likewise triggering regression into autism.
What's needed most urgently, if possible, is a quick, affordable and efficient method of testing children for low cellular energy, perhaps before vaccination even begins.
There was some discussion on the conference call about altering the vaccine schedule in some way, to lower the risk of immune over-stimulation in susceptible children. Certainly, pressure will grow for a change in the schedule - the question is how, when, and if such changes will be made.
Some of the suggestions may not be popular among public health officials. They include:
1) Establishing a maximum number of vaccine antigens to which any child could be exposed on any given day.
2) Permitting the option of separating out the measles-mumps-rubella (MMR) live virus combination vaccines into three distinct "monovalent" shots.
3) Not giving the varicella vaccine (chicken pox) on the same day as the MMR injection - the CDC recently withdrew is recommendation for the Pro-Quad MMR+Varicella vaccine because it doubled the risk of seizures.
Another option is to create new "recommendations for administering multiple vaccines to children who have fallen behind in the recommended childhood immunization schedule," according to the website of the Institute for Vaccine Safety at Johns Hopkins Bloomberg School of Public Health.
Hannah had missed some shots and her doctor decided to "catch up" with the schedule by administering five shots, containing nine vaccine antigens, at once. But some autism activists have pointed out that giving five shots in one day is not that uncommon.
Moreover, they claim, many children regressed into autism following normal vaccination, when the parents religiously adhered to the official schedule.
According to the Johns Hopkins site, "Additional research is needed to determine if other children with autism, especially those with 'the regressive form' of autism, have the same or similar underlying mitochondrial dysfunction disorders."
It adds that, "the advisory groups who make recommendations regarding vaccines will undoubtedly examine this case carefully and make decisions regarding the potential need for changes."
That day may come sooner than you think. It was just announced that, on April 11 in Washington, DC, the National Vaccine Program Office at HHS will convene a meeting of the National Vaccine Advisory Committee's Vaccine Safety Working Group. The Working Group was established to go over the CDC's Immunization Safety Office draft research agenda, and to, "review the current vaccine safety system."
The meeting is open to the public, and I have my seat reserved. But I honestly don't envy the Working Group's very tricky task at hand.
It remains to be seen how all this plays out. And many important questions still lie ahead.
For example, if mitochondrial dysfunction turns out to be as common as 200-per-10,000, and autism is now at 66 per 10,000, did anything bad happen to any of the other 134-per-10,000 children, apart from autism (i.e., ADD, ADHD, speech delay, etc.)?
Moreover, if 10-20% of autism cases can actually be traced to an underlying mitochondrial dysfunction, then what about the majority of autism cases where this did not come into play?
And, if 20% of autism cases are mito related, and 6% of those cases regressed because of vaccines, that would mean that at least 1% of all autism cases were vaccine related. Some estimates of autism go as high as a million Americans - that would mean 10,000 people with vaccine-triggered autism, and billions of dollars in the cost of lifetime care.
(While we are on the subject, isn't it time to fund a study of vaccinated and unvaccinated children, to settle this debate once and for all?)
Finally, the goals of the CISA Network, (which convened the teleconference) are rather progressive and far reaching. It remains to be seen how well the Network fulfills its stated mission, which includes:
Conduct research into "the role of individual variation" on vaccine injury;
"Empower individuals to make informed immunization decisions;"
Help policy makers "in the recommendation of exclusion criteria for at-risk individuals," and;
"Enhance public confidence in sustaining immunization benefits for all populations"
Let's see how long it takes before Network members hang out the proverbial banner: "Mission Accomplished."
A welcome to my fellow statesmen who are visiting for the first time after reading their local news paper! Come on in and take a look around. Drop me an email and say hi!
While you are here, let me invite you to join me and lots of other autism families on April 18th at the Falmouth Memorial Library at 5 Lunt Road in Falmouth, Maine from 7:00-9:00PM for the World Premier Screening of "Autism Yesterday". See the stories of children who have recovered from autism via the biomedical intervention that is working so well for my son Chandler (he has not recovered yet, but he is halfway home to us!).
I understand that four autism doctors will be on hand, so if you ever wanted to investigate ways to improve your autistic child's health and functioning, (or just meet other families that are) this is the chance. For more information contact: Laura Plourde: 829-3474 or mlplourde@verizon.net
Check out the trailer:
This week, check back in, I will be posting lots of recovery stories and updating everyone on how Chandler is progressing during chelation (hint: great!)
Earlier this month, major news broke in the autism world when the federal government conceded that vaccines worsened a health condition in a Georgia girl named Hannah Poling and triggered autism-like symptoms.
Federal officials, while agreeing to pay for her care, maintained that vaccines do not cause autism, a developmental disorder. Still, the case was seen as a victory by a subset of parents certain of a direct link. And they could learn everything they wanted to know about it from Ginger Taylor, a Brunswick woman with an autistic son.
Search for "Hannah Poling" on the Internet, and Taylor's blog www. AdventuresinAutism.com will pop up as the first or second search result. In the days after the case became public, readers from around the world converged on the site, with daily visits climbing from about 350 to 1,700, she said. Her lengthy posts prompted some readers to comment online. Even more e-mailed her.
"The Internet is a great tool for all the debate you can have," said Taylor, who also blogs about medical studies and treatments for her 6-year-old son, Chandler. "I don't know what they did before it."
Taylor is part of a group of Maine parents who are using the Internet to share information on an international stage and create a community around a disorder that is as isolating as it is mysterious in its cause.
The thirst for knowledge is growing as more children are diagnosed with autism. About 1 in 150 children have autism or a closely related disorder such as Asperger's syndrome, estimated the federal Centers for Disease Control and Prevention.
Hallmark symptoms include repetitive behaviors and problems socializing, speaking and reasoning. The degree of severity varies, as does the need for educational and social services.
Answers and support
In Maine, diagnoses among school-age children have more than tripled annually since 2000. Cases among people ages 3 to 21 rose from 594 that year to 1,990 in 2007, according to state education officials.
Similar rate increases have been posted nationally. It's not clear whether autism is becoming more prevalent or whether awareness has grown.
Looking for answers and support, dozens of Maine parents are using blogs, Yahoo! groups, YouTube, listservs and social networking sites such as MySpace to share their experiences with other families in their state and beyond.
At least 15 of them are members on FoggyRock.com, a site founded by Shannon and Steve Johnson of Harpswell, whose older child, Wynn, is autistic.
FoggyRock -- a reference to the uphill climb autism poses -- acts like a FaceBook for members of the autism community. Each member has a home page for posting blog entries, photos, videos and "wit and wisdom." They also can add "contacts" and join groups such as The Autism Sibs and Military Families with Autism.
Shannon Johnson, FoggyRock's editor-in-chief, has her own page, where she writes about the joys of raising 13-year-old Wynn -- like "seeing a genuine smile on his face"-- and the heartbreak of separation. Wynn spent about a year in the hospital, returning in December.
The site has attracted nearly 700 members, some from places as distant as England and Australia, Johnson said. She wants it to be a comforting place for families whose lives change dramatically the moment their child is diagnosed with autism.
Often, one spouse will leave a career to care for the child, as Johnson, a former teacher, did. Many will throw themselves into researching and trying different behavioral therapies, diets and supplements.
For some, family outings, never mind vacations, become a thing of the past.
"I hear from members all the time that they're so isolated," Johnson said. "You can't participate in life the same way you did. When the kids are younger, and they're having behavioral issues, it looks typical. When they're older like my son, and he's having a meltdown, people are afraid."
A Lifeline
For families in more remote areas, where they know of no other people in their situation, the Internet can serve as a lifeline, said Cathy Dionne, program director of the Autism Society of Maine. She said this is especially true in a lightly populated state like Maine.
"A lot of families especially in rural Maine -- we're talking Aroostook County, Washington County -- their connection is their computer," Dionne said.
Dionne, who has an autistic teenager, regularly visits the sites and feels uplifted after reading posts. Though her child does not speak, she is still hopeful for the day she will hear an "I love you."
"The one thing I like about these sites is the 'Guess what my child did today?'" Dionne said. "They share of lot of those type of stories, and I think parents need that inspiration."
Some of the parents say that they feed off one another's advice and encouragement because they feel the medical establishment has abandoned them.
Unlike a condition such as juvenile diabetes, autism comes with less defined guidelines for treatment, parents say.
"When you go to the pediatrician, they say 'there is no cure. Put him in speech therapy. Bye,'" said Taylor, a family therapist before she switched to Web design so she could stay at home with her son. "You're not left with a lot of options."
Taylor belongs to the group of parents who believe autism can be cured in some children. Many blame the mercury-containing preservative in vaccines given to children through the 1990s for causing the disorder, as well as environmental toxins.
On the other end of the spectrum are parents who believe that autism is largely, if not entirely, genetic. Some of them consider the view that autism can be "fixed" as a direct affront to their children.
The Maine-based Web sites and online groups reflect the range of views. Rebecca Waddell of Waldoboro said she falls somewhere in the middle of the pack.
For her blog, www.mainely musings.blogspot.com, Waddell said, she stays away from controversies and topical issues, except for the occasional mention of actress Jenny McCarthy, the parent-turned-activist who's acquired hero status on many autism sites.
Waddell prefers to document her day-to-day experiences with her two sons, the younger of whom, 4-year-old Thane, is autistic. Her site is plastered with close-ups of her sons mugging for the camera and videos of them goofing off with their father and the family husky.
Waddell, who regularly reads four other Maine-based sites, said it is therapeutic to have an online journal and receive feedback from readers.
"I sort of would like people to realize that it's not all horrible," she said. "Yes, there are some challenges. He'll go into a store and scream the whole time. But he can be also incredibly cute and charming and smart."
The rest of the world can see for themselves. Just the other week, she said, another mother in Sweden let her know how adorable Thane is.
Another piece in the jigsaw? 22 March 2008 Melanie Phillips The Spectator
A propos the Wakefield affair discussed in my post below, a recent case in America should not pass without comment. In a landmark ruling, the US Court of Federal Claims, Office of the Special Master, under the National Vaccine Injury Compensation Programme, conceded a vaccine injury to a child from Georgia who, having been developing normally until she received multiple vaccinations, subsequently developed serious brain and body disorders.
Nine year-old Hannah Poling, who at 18 months was recorded by paediatricians as meeting all her developmental milestones, was then given no fewer than five vaccinations in one day — DTaP, Hib, MMR, Varivax, and IPV. Id — following which she suffered a catastrophic breakdown in brain and bodily functions, regressing in language and social development and with persistent gut problems. The court ruled that
the vaccinations CHILD received on July 19, 2000 significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder.
The November report said Hannah's vaccine reaction had ‘manifested’ as early-onset brain disease, with ‘features of autism spectrum disorder.’ But the February report is more blunt. It says that Hannah's vaccines ‘caused’ her ‘autistic’ brain disease.
This ruling is the first time a causal link has been established between childhood vaccines and autistic spectrum disorder. It is important to note straightaway an important point of difference from the MMR controversy in the UK. This child’s immune system collapsed not as a result of MMR alone but because she received multiple vaccinations in one day, including the MMR triple jab.
Precisely what caused Hannah Poling’s catastrophic reaction, therefore, cannot be established. We don't know whether it was one of these vaccines or the fact that they were in combination. Nevertheless, this case should not be dismissed as having no relevance. These vaccines did include MMR, and the symptoms she displayed bear remarkable similarities to those reported by countless parents in the MMR controversy. Despite the differences, the significance for the MMR controversy is that this ruling established for the first time that a hitherto unknown problem with a child’s cellular system caused a catastrophic reaction in that child to a vaccination schedule, including delivery of the already multiple MMR, that has produced no ill-effects in other children. This suggests that, in some children, multiple vaccines overload immune systems that are particularly vulnerable.
In America, the health authorities are dismissing this ruling as a one-off with no further significance. But surely it suggests instead that urgent questions now demonstrably need to be asked about both the safety of these these childhood vaccines in themselves and the policy, so dear to the medical establishment on both sides of the Atlantic, of multiplying the number of vaccines delivered simultaneously to small children?
Read David Kirby's Editorial,"Give Us Answers on Vaccines" in the Atlanta Journal Constitution Today - and then call Congress!
Tell Your Congressional Representatives that You Want Answers!
Today's Atlanta-Journal Constitution contains an editorial by David Kirby entitled
We have recently had a glimpse of the truth about the link between vaccines and neurodevelopmental disorders like autism. When the news was revealed by the Poling family that the government conceded that vaccines caused their daughter, Hannah's, autism, we had a window into the truth about vaccine safety and what has happened to a generation of children.
But the Poling documents and the truth remain sealed!
We want to parents and family members to call Congress...call...call...and keep calling, and demand the
Truth about vaccine safety,
Truth about whether vaccines have harmed our kids and
JUSTICE for our children!
Talking points suggestions:
We need the truth about vaccine safety.
For years the government has denied any association between vaccines and neurodevelopmental disorders such as autism. In private, public officials have conceded that vaccines have caused autism, such as in the government's recent concessions in the Poling case. Vaccines have been found to have caused autism in at least nine other cases considered by our public officials.
Our kids were damaged because because of the vaccine program, but the government told us vaccines were safe. Our children missed the statute of limitations because we trusted the CDC when they told us repeatedly there was no association between vaccines and neurodevelopmental disorders.
We want the Poling documents released.
We want access to the VSD, the publicly financed Vaccine Safety Datalink database that may answer important questions about vaccines and their relationship to neurodevelopmental disorders such as autism.
We want the statute of limitations extended with a look back so that hundreds of thousands children harmed by vaccines are allowed access to justice. Right now they have no right to make claims and obtain justice.
If Congress can hold hearings on Roger Clemens's steroid use, our elected representatives can hold hearings on why hundreds of thousands of children are suffering with neurodevelopmental disorders in an unprecedented epidemic.
We want the CDC and the FDA held accountable.
"Millions of parents are anxiously waiting for their government to tell them what the hell is going on."
CALL YOUR REPRESENTATIVES, AND KEEP CALLING UNTIL THEY ANSWER YOU AND AGREE TO SUPPORT OUR KIDS . "We are everywhere and we are not going away!"
New Poling Case documents are surfacing which inform us that, "Hannah's autism was caused by vaccine-induced fever and overstimulation of her immune system, according to court documents."
That is NOT what Julie Gerberding told us out side of the CDC two weeks ago.
Keep those calls to the White House up. 202-456-1414 Ask them when they are going to get HHS to release all the documents from the Poling case and all the other cases in Vaccine court.
Running tomorrow in the Atlanta Journal Constitution:
Give us answers on vaccines By DAVID KIRBY Published on: 03/20/08
By now, many parents in America have heard of the Hannah Poling court case. They know the government has acknowledged that vaccines contributed to autism in at least one little girl from Georgia. Understandably, they are worried, and they want answers.
But instead of frank talk from leading health officials, their concerns are being met with stonewalling, denial and misinformation.
By refusing to address what really happened to Hannah — by commanding parents to settle down and adhere to the nation's rigid immunization regime — officials will only drive people away from vaccines in anxiety-ridden droves.
But what if we could test children for underlying conditions that might increase their risk of vaccine injury and autism? And what if we allowed those at risk to slightly delay and spread out their shots?
It's a difficult, but not impossible, proposition. And I believe doing so would reduce the rate of autism, seizure disorders and even asthma in some children. And we would boost vaccination rates by restoring faith in the nation's teetering immunization program.
Why do I say this? New documents have surfaced in the Poling case that shine more light on how Hannah's vaccine injury led to autism.
A government document filed in the case last November conceded that Hannah's vaccines had aggravated an underlying disorder of the mitochondria. Mitochondria are the tiny powerhouses within each cell that convert food and oxygen into energy. Government officials acknowledged that Hannah's disorder led to a condition known as low cellular energy metabolism, which was aggravated by vaccines and ultimately led to an autism diagnosis.
It was a tantalizing admission but did little to explain just how the vaccines had aggravated the disorder or caused autism.
But on Feb. 21, the U.S. government made a second, unpublicized concession in the case. In addition to triggering autism, officials now admitted, Hannah's vaccines had also led to her "seizure disorder," or epilepsy.
And there was more. The November document claimed that Hannah had a mitochondrial "disorder." But by February, this was modulated to a mere mitochondrial "dysfunction."
That's because Hannah's underlying condition was asymptomatic and most likely environmentally acquired. It was not some rare, grave, inherited disease that would have progressed to autism anyway, as many officials contend.
The November report said Hannah's vaccine reaction had "manifested" as early-onset brain disease, with "features of autism spectrum disorder."
But the February report is more blunt. It says that Hannah's vaccines "caused" her "autistic" brain disease.
But the real bombshell was this: Hannah's autism was caused by vaccine-induced fever and overstimulation of her immune system, according to court documents. Her low cellular energy and reduced metabolic reserves, due to mitochondrial dysfunction, were overstressed by the contents of nine vaccines (including mercury) at once.
The Cleveland Clinic defines low cellular energy metabolism disorder this way: "The process of converting food and oxygen (fuel) into energy requires hundreds of chemical reactions, and each chemical reaction must run almost perfectly in order to have a continuous supply of energy. When one or more components of these chemical reactions does not run perfectly, there is an energy crisis, and the cells cannot function normally. As a result, the incompletely burned food might accumulate as poison inside the body."
The cause of Hannah's mitochondrial dysfunction is up for debate, though ample evidence exists to implicate heavy metals in air, water, food and vaccines as possible suspects. But the government has acknowledged that low cellular energy can increase the risk of immune system overdrive, and regression into autism.
Now, one would think that investigating — and preventing — such vaccine-induced overstimulation in susceptible children would be a top priority of health officials. But it is not.
Dr. Julie Gerberding, director of the Centers for Disease Control and Prevention, has vowed to "adamantly" enforce the one-size-fits-all vaccine schedule, no matter what happened to Hannah and other kids like her.
Frantic parents, desperate for answers, were admonished by Gerberding to "set aside this very isolated, unusual situation" in so-called Vaccine Court, even though "the court apparently made the decision that it is fair to say that vaccinations may have been one of the precipitators."
Gerberding was either grossly misinformed, or lying.
To begin with, this "decision" was not made by the court at all, but by medical personnel working for the Secretary of Health and Human Services, Gerberding's boss.
More important, the Poling case is neither isolated nor unusual. At least 12 other autism-related claims have been paid out in Vaccine Court to date, and perhaps hundreds more cases like Hannah's are pending.
Most striking is how typical Hannah's cellular dysfunction may be among children with autism. While extremely rare in the general population, at two per 10,000 people, it seems unusually common in autism — with estimates up to 2,000 per 10,000.
Many opinion leaders are calling on the government to release all relevant documents leading to the Poling concessions. The family has waived all claims to privacy, and the public has a right to know.
For now, all we have is the CDC Web site, which says that "simultaneous vaccination with multiple vaccines has no adverse effect on the normal childhood immune system."
But did Hannah have a "normal" immune system? Are other kids out there also metabolically primed for overstimulation from too many shots at once? Should their vaccines be spread out?
Instead of answers, we get adamant silence. This is not a matter of national security. It's a national emergency. Millions of parents are anxiously waiting for their government to tell them what the hell is going on.
• David Kirby, an investigative journalist, is author of "Evidence of Harm – Mercury in Vaccines and the Autism Epidemic: A Medical Controversy"
So in a discussion on a yahoo list, someone posted a quote from the Boston Globe that the US spends the entire autism budget in Iraq every four hours, which they argued, was a good reason to end the war.
I argue that even if Bin Laden and his friend Al Q surrendered tomorrow and they troops were home by Tuesday, the US would still not be doing any more than it is to deal with the autism problem.
Because governments do what is important to them and if autism causes and cures were important to the US Government and its health authorities, they would have been pouring resources into it for years.
Please. OJ looked harder for Nicole's 'real killers' than Julie has looked for the causes and possible cures of autism. She has outlived her welcome.
We have all lived through what it looks like for the government to pay lip service to autism, yet ignore, and even sabotage the progress in putting the pieces together.
For the sake of fun, and envisioning a better world... let's fantasize what it would look like if the government and the medical community who follow their lead actually DID want to know the causes and possible cures of Autism!
Here's what I think:
Julie Gerberding's press statements after the Hannah Poling announcement included these: "the government has made absolutely no statement about indicating that vaccines are the cause of autism, as this would be a complete mischaracterization of any of the science that we have at our disposal today", and, "This is a complete mischaracterization of the findings of a very simple situation of one child with an unusual disorder, and it would be completely wrong to say that this has bearing to the vast majority of children with autism",
In my fantasy, our good friend Julie would have said something to the effect of:
"We are excited about all that we are learning about the possible causes and potential cures of autism from the Poling case, and are grateful that the Polings have been so open with their daughters medical information so that we can use her case to help people both now and for generations to come. I am encouraging all medical experts, especially those with knowledge in mitochondrial function to take time this week to read Dr. Poling's study on Hannah and see if you can use your expertise to help shed light on how this new information on mito dysfunction piece may fit into the autism puzzle, and share your ideas with those already at work on autism.
I have spoken with Dr. Tayloe, head of the AAP, and they will be issuing an alert to pediatricians across the country to begin screening their patients with ASD for the mito dysfunction that Hannah has, so we can get an idea of what percentage of autism cases her medical scenario may represent.
In the mean time, we understand that this ruling may give parents pause in their decision making in vaccinating their children. We too want to be sure that the vaccine schedule is not contributing to the prevalence of autism, so we are putting the following measures in place.
First, in addition to the regular vaccine schedule, we will be adding two variations as options for parents. One for parents who are concerned about a link between vaccines and neurodevelopmental disorders that is a more conservative schedule. It will offer kids the same protection against diseases, but will take much longer to implement as the vaccines are spaced out. And another, much more conservative, schedule for those who who are classified as high risk.
Second, until we have a few more answers, we encourage people with ASD to forgo vaccination for the next few months until we have a better idea of how many of them may be effected by Hannah's mito problem and can put appropriate screening measures in place. We will work to have that done quickly, as we believe vaccination is important and want them to be able to continuing vaccinating if it is found that it is safe for them. Such people should only be vaccinated in the case of an immediate threat to their health from a viral outbreak of the following life threatening illnesses (insert list that does not include chicken pox or the flu)
Third, we are also working with the AAP on retraining pediatricians to accurately access, treat and report reactions to vaccines as there is a chance that these could be early signs that a child cannot tolerate vaccination. We have learned much from parents as to what the first signs of autism were in their kids and want to doctors to use that information to their advantage.
Fourth, since we know so much more than we did about the relationship between vaccination and autism that we did when the VICP was established, we are petitioning congress to remove the three year statute of limitations for filing a claim with the fund. Any one injured at any time may now apply. More from my good friend John Gilmore of A-CHAMP on that following my comments.
Further, we are petitioning DOJ and HRHS to open any other cases ruled on in the VCIP that included any symptoms of autism and inviting the families to come forward and share their stories if they feel comfortable doing so. The more we can understand these individual cases, the more clues that we will have to understanding autism as a whole.
It is our goal by the end of the year to have a screening plan in place so that every child can be screened at birth to see if they are at risk for vaccine injury.
This is an exciting time for autism research. We have so much information to sort through and piece together, and are so pleased that so many families have been so willing to share their stories of regression and successes. CDC is proud to announce that in partnership with Defeat Autism Now, Thoughtful House, Generation Rescue and The National Autism Association, we will be holding regional conferences beginning in six months that are free to medical professionals and autism parents so that we can share all that we are learning from these autism treatment pioneers with the medical community at large.
Vaccination against deadly disease is important, and we will do everything we can to find the balance between fighting off viral infections and protecting against developmental disabilities, so that Americans can live in a society free from these epidemics.
Can you imagine?? If stuff like that happened, people might start trusting their government!
Also, I think our kids would be little rock stars in their towns, or treated like little war heroes because everyone would know that they took the hit so that everyone else's kids would not get polio.
Lastly, I think that when I went to my new pediatrician and told him that my son was half way recovered from autism and lost many of his autism symptoms, he would be excited to have come across a recovery story of his very own. He would have a special luncheon with all the docs and nurses in his practice and invite me to come and bring Chandler and talk about all the things that we have tried and what worked for him and what didn't.
What do you think the world (or your world) would be like?
...that not every vaccine is safe for every child.
Honey Renecella, mother of twins with vaccine induced autism and Suzanne Walter, mother of a girl whom she did not vaccinate who subsequently contracted meningitis, appeared together on The Today Show yesterday to tell their stories and talk about vaccine safety.
I am not sure if the show's bookers were expecting a cat fight, but what they got was anything but...
See The Today Show Part 2 to see Honey try to hold in her anger at the statements of head of the AAP who claims that all vaccines are for every child.
Yesterday, in a segment on autism and vaccines on the Today Show, Dr. David Tayloe, President Elect of the American Academy of Pediatrics, was asked the following question:
"Do you believe that all vaccines should be used on every child?"
His complete response:
"Yes. I think any of the vaccines we have today have been tested and proven to be safe, and the credible studies don't show any relationship between vaccines and permanent injury. So we favor this and we know that unless we have vaccination rates that are in the 90 to 95% range we are not going to prevent epidemics from coming into this country of measles, of polio, from countries where these diseases are still endemic. So its very important that we vaccinate all our children."
Repeating: No "relationship between vaccines and permanent injury".
This is probably the most glaring falsehood that I have heard in the vaccine debate yet, stated by the chief pediatrician in the US, to whom all other pediatricians look to for guidance in how to treat their patients.
Has Dr. Tayloe has never heard of the Federal Program called the Vaccine Injury Compensation Program, the sole purpose of which it to compensate people for the permanent injuries that they sustain from approved vaccines?
"The Vaccine Injury Table (Table) makes it easier for some people to get compensation. The Table lists and explains injuries/conditions that are presumed to be caused by vaccines. It also lists time periods in which the first symptom of these injuries/conditions must occur after receiving the vaccine. If the first symptom of these injuries/conditions occurs within the listed time periods, it is presumed that the vaccine was the cause of the injury or condition unless another cause is found. For example, if you received the tetanus vaccines and had a severe allergic reaction (anaphylaxis) within 4 hours after receiving the vaccine, then it is presumed that the tetanus vaccine caused the injury if no other cause is found."
A quick rundown of a few of the covered reactions:
DTaP, Tdap, DTP-Hib, MMR, MR, R - Anaphylactic shock, encephalopathy, any accute complication or sequela of above events(including death).
Rubella vaccines - Chronic arthritis, any acute complication or sequela (including death) of above event.
Measles vaccines - Thrombocytopenic purpura, Mealses, any acute complication or sequela (including death) of above event.
Live Virus Polio vaccines - Polio.
Inactivated Virus Polio vaccines - Anaphylactic shock, any acute complication or sequela of above events(including death).
I am pretty sure that "Death" could be considered permanent injury.
Here is a random sample of insert quotes. Let's start with the one that sent my two week old Chandler into three months worth of fevers and crying and two years of constipation:
"Multiple Sclerosis: Although no causal relationship has been established, rare instances of exacerbation of multiple sclerosis have been reported following administration of hepatitis B vaccines and other vaccines. In persons with multiple sclerosis, the benefit of immunization for prevention of hepatitis B infection and sequelae must be weighed against the risk of exacerbation of the disease."
"Carcinogenesis, Mutagenesis, Impairment of Fertility: ENGERIX-B has not been evaluated for carcinogenic or mutagenic potential, or for impairment of fertility."
"Postmarketing Reports: Additional adverse experiences have been reported with the commercial use of ENGERIX-B. Those listed below are to serve as alerting information to physicians.
"CONTRAINDICATIONS - Hypersensitivity to any component of the vaccine, including yeast, is a contraindication. This vaccine is contraindicated in patients with previous hypersensitivity to any hepatitis B-containing vaccine."
(Even though my baby, in no uncertain terms, showed "hypersensitivity", his doctors continued to administer the vaccine to him until his regression at 18 months).
This is given to babies that are hours old. And remember, the head of the AAP says, even though the package insert says differently, that the vaccine is safe for every child and no permanent injury will occur.
"Controlled studies on FLUVIRIN® have not been conducted to demonstrate safety in pregnant women."
"CONTRAINDICATIONS INFLUENZA VIRUS IS PROPAGATED IN EGGS FOR THE PREPARATION OF INFLUENZA VIRUS VACCINE. THUS, THIS VACCINE SHOULD NOT BE ADMINISTERED TO ANYONE WITH A HISTORY OF HYPERSENSITIVITY (ALLERGY) TO CHICKEN EGGS, CHICKEN, CHICKEN FEATHERS OR CHICKEN DANDER. THE VACCINE IS ALSO CONTRAINDICATED IN INDIVIDUALS HYPERSENSITIVE TO ANY COMPONENT OF THE VACCINE INCLUDING THIMEROSAL (A MERCURY DERIVATIVE) (SEE ADVERSE REACTIONS). EPINEPHRINE INJECTION (1:1000) MUST BE IMMEDIATELY AVAILABLE SHOULD AN ACUTE ANAPHYLACTIC REACTION OCCUR DUE TO ANY COMPONENT OF THE VACCINE. IMMUNIZATION SHOULD BE DELAYED IN PERSONS WITH AN ACTIVE NEUROLOGICAL DISORDER CHARACTERIZED BY CHANGING NEUROLOGICAL FINDINGS, BUT SHOULD BE CONSIDERED WHEN THE DISEASE PROCESS HAS BEEN STABILIZED. THE OCCURRENCE OF ANY NEUROLOGICAL SYMPTOMS OR SIGNS FOLLOWING ADMINISTRATION OF ANY VACCINE IS A CONTRAINDICATION TO FURTHER USE. THE VACCINE SHOULD NOT BE ADMINISTERED TO PERSONS WITH ACUTE FEBRILE ILLNESSES UNTIL THEIR TEMPORARY SYMPTOMS AND/OR SIGNS HAVE ABATED."
WARNINGS Influenza Virus Vaccine should not be given to individuals with thrombocytopenia or any coagulation disorder that would contraindicate intramuscular injection unless, in the judgment of the physician, the potential benefits clearly outweigh the risk of administration. Patients with impaired immune responsiveness, whether due to the use of immunosuppressive therapy (including irradiation, corticosteroids, antimetabolites, alkylating agents, and cytotoxic agents), a genetic defect, human immunodeficiency virus (HIV) infection, or other causes, may have a reduced antibody response in active immunization procedures.
But if Dr. Tayloe is right, the package insert should be changed to read:
"CONTRAINDICATIONS None."
"WARNINGS None."
P.S.:
"No studies regarding the simultaneous administration of inactivated influenza vaccine and other childhood vaccines have been conducted."
"CONTRAINDICATIONS Hypersensitivity to any component of the vaccine, including gelatin. Do not give M-M-R II to pregnant females; the possible effects of the vaccine on fetal development are unknown at this time. If vaccination of postpubertal females is undertaken, pregnancy should be avoided for three months following vaccination (see INDICATIONS AND USAGE, Non-Pregnant Adolescent and Adult Females and PRECAUTIONS, Pregnancy). Anaphylactic or anaphylactoid reactions to neomycin (each dose of reconstituted vaccine contains approximately 25 mcg of neomycin). Febrile respiratory illness or other active febrile infection. However, the ACIP has recommended that all vaccines can be administered to persons with minor illnesses such as diarrhea, mild upper respiratory infection with or without low-grade fever, or other low-grade febrile illness. Patients receiving immunosuppressive therapy. This contraindication does not apply to patients who are receiving corticosteroids as replacement therapy, e.g., for Addison's disease. Individuals with blood dyscrasias, leukemia, lymphomas of any type, or other alignant neoplasms affecting the bone marrow or lymphatic systems. Primary and acquired immunodeficiency states, including patients who are immunosuppressed in association with AIDS or other clinical manifestations of infection with human immunodeficiency viruses;41-43 cellular immune deficiencies; and hypogammaglobulinemic and dysgammaglobulinemic states. Measles inclusion body encephalitis60 (MIBE), pneumonitis61 and death as a direct consequence of disseminated measles vaccine virus infection have been reported in immunocompromised individuals inadvertently vaccinated with measles-containing vaccine. Individuals with a family history of congenital or hereditary immunodeficiency, until the immune competence of the potential vaccine recipient is emonstrated."
"WARNINGS Due caution should be employed in administration of M-M-R II to persons with a history of cerebral injury, individual or family histories of convulsions, or any other condition in which stress due to fever should be avoided. The physician should be alert to the temperature elevation which may occur following vaccination (see ADVERSE REACTIONS). Hypersensitivity to Eggs Live measles vaccine and live mumps vaccine are produced in chick embryo cell culture. Persons with a history of anaphylactic, anaphylactoid, or other immediate reactions (e.g., hives, swelling of the mouth and throat, difficulty breathing, hypotension, or shock) subsequent to egg ingestion may be at an enhanced risk of immediate-type hypersensitivity reactions after receiving vaccines containing traces of chick embryo antigen. The potential risk to benefit ratio should be carefully evaluated before considering vaccination in such cases. Such individuals may be vaccinated with extreme caution, having adequate treatment on hand should a reaction occur"
"The AAP states, "Persons who have experienced anaphylactic reactions to topically or systemically administered neomycin should not receive measles vaccine."
Now that Dr. Tayloe is running the AAP, will they remove that statement from the insert?
I have not even gotten to the sections on Adverse Reactions yet, but I have already made my point.
Oh, yeah... and then last week the Hannah Poling case broke.
It is factual to say that in come cases, approved vaccines DO result in permanent injury and that not all vaccines are safe for all children.
Dr. Tayloe is wrong.
Either he knows about the things which I have written above, in which case he has lied to the American public and he has no place being the head of the AAP, or he does not know the things which I have written above, in which case he is incompetent to be the head of the AAP.
... and there is not a chance in hell that he does not know about all that I have written here.
Additionally, allow me to draw your attention to the second half of Dr. Tayloe's statement:
"So we favor this and we know that unless we have vaccination rates that are in the 90 to 95% range we are not going to prevent epidemics from coming into this country of measles, of polio, from countries where these diseases are still endemic. So its very important that we vaccinate all our children."
Note the goal of his vaccination policy, not to serve the best interest of your individual child, but to protect this country of a viral epidemic.
Keep in mind, that when your are in the pediatricians office and he is looking at your child and making decisions on how to treat him, the AAP, his professional organization has taught him that your baby is not his client. That 'society' is his client. And that depending on how ethical he is or how sharp his critical thinking skills are, he may not actually be serving your child, but "the greater good".
We have been lobbying the AAP to reevaluate vaccines and move in a more cautious direction in making recommendations for their doctors.
If the election of Dr. Tayloe and his criminal pronouncements are the response to the AAP of parents increasingly loud protestations of their destructive direction, then it is time to start ignoring the AAP.
There are many, many pediatrician out there who genuinely want to work in the best interests of their patients, and as difficult as it was for me and Honey to hear Dr. Tayloe lie on tv, it must have been more difficult for them to have heard. They know that serious vaccine reactions exist, and they just watched the man that represents them tell a very stupid lie to the entire country.
(please excuse any typos, etc, as I have not had a chance to proof this. I reserve the right to make corrections)
Instead of "Why focusing on thimerosal misses a larger story", I think it would be more accurate to say, "Why focusing on thimerosal is the tip of a larger story"
Most autism looks to be derived from a toxic insult, of which vaccines are likely the worst offender, and of the ingredients of which mercury is most likely the worst offender.
The questions at the conclusion are important, but they have pretty much been answered. And those answers are leading to recovered children. It is hard to argue with results.
The Wrong Debate Over Autism Why focusing on thimerosal misses a larger story
Back in 2005, CJR published a story by Daniel Schulman about media coverage of "whether a mercury-containing vaccine" preservative called thimerosal was to blame for an alarming spike in autism cases among a generation of children. Last summer, yet another study was released that showed no link between autism and vaccinations, and last week came news of a lawsuit settlement that required a girl's medical costs to be covered by the government after she was diagnosed with a rare mitchochondria disorder and autistic symptoms related to receiving nine vaccinations in one day. Clearly, the debate rages on, so we decided to take another look at the press-coverage landscape.
Schulman concluded in his piece that the media had been too quick to close the door on the potential link between thimerosal and autism. "[W]ith science left to be done and scientists eager to do it, it seems too soon for the press to shut the door on the debate," he wrote. He cited stories like a New York Times piece by Gardiner Harris and Anahad O'Connor in June of the same year, with the headline: "On Autism's Cause, It's Parents vs. Research".
Schulman, now an editor at Mother Jones, noted that while the vast majority of studies appeared to disprove a vaccine link to autism, there were serious researchers (notably Dr. Mady Hornig and Dr. Ezra Susser, both epidemiologists at Columbia's Mailman School of Public Health; Richard Deth, a Northeastern University pharmacologist; and Jill James, a professor of pediatrics at the University of Arkansas) who supported the possibility that environmental factors—and perhaps thimerosal in vaccinations—could at least be triggers for autism in predisposed populations that might otherwise not have developed the disorder.
(It's a lot like the global warming debate in reverse: almost every major study said there was no credence to the autism-vaccine link, but there were, and still are, a few credible voices out there saying the case isn't closed.)
So, where are we now?
Last summer, a report on vaccinations and neurological problems in children was published in the New England Journal of Medicine and the vaccine-autism debate got a little more fuel. Depending on which side of the fence you stand, the argument can be made that coverage of this report was good or bad. Autism is a touchstone issue, so it was often mentioned in headlines and stories, even if only to note that the study itself was not focused on autism.
A sample of stories and headlines from September 27, 2007, paints a picture:
Newsday: "CDC: Vaccines are safe; Though autism was not a focus, study says mercury preservative in shots did not cause neurological problems"
Federal health officials yesterday reassured parents that childhood vaccines are safe and that kids who got routine immunizations a decade ago when shots contained a controversial mercury preservative are not at risk of neurological problems….An investigation examining autism and thimerosal, the preservative that once was added to common vaccines, is expected to be published within 12 months, scientists at the Centers for Disease Control and Prevention said yesterday.
The New York Times: "Vaccine Compound Is Harmless, Study Says, as Autism Debate Rages"
Yet another study has found that a controversial vaccine preservative appears to be harmless. But the study is unlikely to end the increasingly charged debate about vaccine safety.
The Globe and Mail (Canada): "Vaccine preservative can cause tics; But according to U.S. research, thimerosal does not appear harmful to kids' learning skills or physical abilities"
"The scientific literature to date does not support a causal link between autism and thimerosal, but it's important to say this study isn't of autism," she said. "There's a separate CDC study ongoing that's going to get at that question to provide more information."
Even more recently, the issue of an autism-vaccine link came up in response to a settlement involving the government and nine-year-old Hannah Poling. Poling started showing symptoms typical of autism shortly after receiving a bundle of vaccinations when she was a toddler. The government decided that Poling's vaccinations, given on top of a rare metabolic disorder, caused her problems.
The headlines this time covered broader ground: KHBS Fort Smith, "Vaccine-Autism Link Unproven By Controversial Georgia Case"; Atlanta Journal-Constitution, "Ga. girl helps link autism to childhood vaccines"; The New York Times, "Deal in an Autism Case Fuels Debate on Vaccine".
Not even John McCain could let this one go by as was noted by Benedict Carey in the Times, in a piece titled, "Into the Fray Over the Cause of Autism":
"It's indisputable that autism is on the rise among children," Senator John McCain said while campaigning recently in Texas. "The question is, What's causing it? And we go back and forth, and there's strong evidence that indicates that it's got to do with a preservative in vaccines."
With that comment, Mr. McCain marked his entry into one of the most politicized scientific issues in a generation.
It appears that Schulman was on to something when he claimed the media had taken too narrow a tack on the autism-vaccine link issue. But he, too, may have had his keyboard aimed in the wrong place.
The problem with the coverage was not that the few credible opposition voices didn't receive balanced coverage, but rather that the whole issue of whether vaccines containing thimerosal or mercury cause autism served as a distraction from the ongoing efforts to tease apart the causes of this enigmatic disorder. That's not to say the vaccine issue shouldn't be covered at all, but that there are many more important—if less emotionally driven—questions related to autism that deserve further investigation.
Is autism caused by environmental factors? Can it be triggered by these factors? How does epidemiology try to solve these riddles? Are some people genetically predisposed to respond to environmental factors (like mercury)? Can we find a way to screen for these predispositions (like Poling's metabolic condition)? What else is in our environment that poses a risk?
Lest we forget about the long list of environmental contaminants that have been pointed out going back to Rachel Carson's Silent Spring, the AP just released its own investigation that found a wide array of pharmaceuticals in tap water across America. A potent reminder that while important, the vaccination story is only one part of a bigger issue.
Schulman is right about one thing: when we simplify science to "yes" or "no" questions the repercussions can be dangerous. And simply because a few scientist are in the minority does not mean their careers and their work should be dismissed with the wave of a hand.
We may never find an answer to the autism-vaccine debate that satisfies everyone—and that's okay. Science pushes on, and the myriad questions about autism will continue to be researched long after the last mercury-containing inoculation is administered.
Dr. Stephen Novella on his blog NeuroLogica has posted his evaluation of the Poling case and why he believes it does not support the vaccine autism connection.
Dr. Jon Poling has responded as seen on The Age of Autism countering the arguement and expanding on the information that has been available publicly on the case.
It is a discussion between two neurologists and I will need to read them each 5 times before I can even begin to comment on the conversation.
But I will note two things.
First, I am impressed that Dr. Poling lists his potential conflicts of interest at the end of his letter. I think that every medical professional should do that as a part of their signature (For example I would sign Ginger Taylor, B.S., M.S., Mother of regressive autistic child who suspects vaccines had a causal relationship to ASD, Has Google Ads on her autism blog).
Second, for all of his in depth analysis of the medical facts in this case, Dr. Novella failed to correctly discern the sex of the child in question. He refers to Hannah several times as "he" and "the child", never as a female. He criticizes David Kirby's articles about the case, but did not read them thoughtfully enough to see that Mr. Kirby was clearly talking about a girl.
I will reserve this space for further comment as I come to understand this case further.
No. But David Kirby and other anti-vaccinationist ideologues and members of the so-called mercury militia would like you to think so. For background, the Autism Omnibus refers to a set of hearings before the Vaccine Injury Compensation Program regarding claims by about 5000 parents that their childrens’ autism was caused by vaccines. These claims are primarily based upon the various hypotheses that the MMR vaccine, or thimerosal in some vaccines (but not MMR), or the combination of both, is a cause of autism.
So far there have been hearings, but only one final decision. In November the US government settled one case in favor of the petitioner. This is the case those who have supported the failed hypothesis that vaccines cause autism now point to as admission that they were right all along (or at least as a means of stoking the flames of fear about vaccines.) But the US government did not admit vaccines cause autism - they conceded one case that is highly complex and not necessarily representative of any other case and cannot be reasonably used to support the vaccine/autism connection.
David Kirby, author of Evidence of Harm, wrote a highly misleading article the other day in the Huffington Post on this issue. Orac has already done an excellent job of tearing down Kirby’s claims. He points out that legal cases are often decided for legal - not necessarily scientific - reasons. That the government only conceded that “compensation is appropriate.” That is all - they conceded nothing about the larger question of vaccines and autism. Orac also points out that if this case were a concession of a connection why would the petitioner’s lawyers settle and give away a case that could win them all their other cases?
David Kirby has also written a follow up article, where he publishes verbatim the US government’s decision. Kirby asks his readers:
If you feel this document suggests that some kind of link may be possible, you might consider forwarding it to your elected representatives for further investigation.
But, of course, if you feel that this document in no way implicates vaccines, then let’s just keep going about our business as usual and not pay any attention to all those sick kids behind the curtain.
I think Kirby is hoping that most people will not have the patience or medical background to read and understand the entire document, and that they will come away with a vague notion that there must be something to all this vaccine fear-mongering. What does the document really tell us?
To summarize the case history, the child in the case appeared normal and healthy, except for chronic otitis media, until about 20 months of age at which time he had a series of vaccines according to the routine vaccination schedule. Two days later the child had a fever to 102.3, was lethargic, irritable, and would arch his back when he cried. The child then developed a rash. It was later determined that the child had: “encephalopathy progressed to persistent loss of previously acquired language, eye contact, and relatedness.” The child regressed and developed symptoms similar to those of autism spectrum disorder. However, the child does not have autism - he has a regressive neurological disorder that includes blood and muscle abnormalities not seen in autism, and any clinical resemblance to autism is not a reflection of a common cause.
Six years after symptoms began the child also developed partial temporal lobe epilepsy that required treatment.
During this time the child also had an extensive workup, which discovered:
A CSF organic acids test, on January 8, 2002, displayed an increased lactate to pyruvate ratio of 28,1 which can be seen in disorders of mitochondrial oxidative phosphorylation.
A muscle biopsy test for oxidative phosphorylation disease revealed abnormal results for Type One and Three.
In February 2004, a mitochondrial DNA (”mtDNA”) point mutation analysis revealed a single nucleotide change in the 16S ribosomal RNA gene (T2387C)
It if often difficult or impossible to draw firm conclusions from a single case, so I will lay out what I see as all the possible alternative hypotheses to explain this information.
1) One possibility is that the child was perfectly normal prior to the vaccines, which caused an encephalitis (inflammation of the brain) which caused brain damage, including the later seizures. The metabolic disorder and mutation may be a red herring and have no bearing on the child’s clinical condition.
2) The mitochondrial disorder predisposed the child to have a reaction from the vaccines, resulting in encephalitis. The subsequent neurological regression was due to some combination of the vaccine-induced encephalitis and the underlying mitochondrial disorder.
3) The child’s mitochondrial mutation is the primary cause of their neurological regression, but that this regression was exacerbated by the vaccine-induced encephalitis (this seems to be the US government’s conclusion).
4) The child has a mitochondrial encephalopathy which is the sole cause of all of the child’s neurological signs and symptoms. The reaction to the vaccines may have played no role at all in the subsequent regression, and the child’s current neurological condition is exactly what it would have been had they never been vaccinated. It is even possible that the encephalitis was merely the first manifestation of the mitochondrial disorder and the timing after the vaccines was merely coincidental.
That lays out the spectrum of possibilities in this case. At this point in time we do not have (or at least I am not privy to) sufficient scientific information to say definitively where along this spectrum the truth lies. The US government’s decision was based partly on this uncertainty - erring on the side of compensating the child and family.
But we can discuss the plausibility of each scenario. Kirby dismisses anything resembling option 4, but his dismissal is naive and unjustified. In fact the patient’s clinical syndrome resembles what is called a mitochondrial encephalopathy - with increased lactic acid, abnormal muscle biopsy, neurological regression, appropriate age of onset, even seizures. It is probably not a coincidence that the child has a point mutation in a gene that has been previously linked to these very mitochondrial disorders. Kirby incorrectly argues:
While it’s true that some inherited forms of Mt disease can manifest as developmental delays, (and even ASD in the form of Rhett Syndrome) these forms are linked to identified genetic mutations, of which T2387C is not involved. In fact little, if anything, is known about the function of this particular gene.
This is misleading. Kirby refers to “this particular gene” which makes me think that he believes T2387C is a gene. It’s not - it describes a point mutation (at location 2387 a thymidine has replaced a cytosine). The gene is the 16S ribosomal RNA gene. Mutations in this gene have been identified to cause mitochondrial encephalopathy. So Kirby is just wrong. It is true that I could not find that this specific mutation has been identified before, but that is common in genetics - a disease is linked to point mutations in a specific gene (or perhaps specific regions of a gene) but most or all families identified have their own specific mutation.
This makes option 4 very plausible - it would be an incredible coincidence if this child just happened to have a mutation in a gene that was known to cause their exact constellation of neurological signs and symptoms and yet the mutation was not the sole or primary cause of those symptoms.
But it does not rule out option 3 - that the mitochondrial disorder was the primary cause of the child’s neurological disorder but that a reaction to the vaccines worsened the ultimate symptoms. Therefore the government’s decision was reasonable - but is absolutely not a concession about any claim made by the petitioners concerning a link between vaccines an autism.
It does, however, make any hypothesis resembling option 1 or 2 extremely unlikely. Further testing regarding the physiological effects of this child’s specific mutation would be helpful, and such testing may be under way but I could find nothing published to date. It is theoretically possible that the identified mutation does not cause a change in the gene product or mitochondrial function, and is therefore just a coincidence. But this is unlikely given the clinical features in this case are a good match to known mutations of that gene.
Kirby, however, apparently wants to wring as much fear and confusion out of these events as he possibly can. So now he speculates wildly that maybe children diagnosed with autism really have this mitochondrial disorder combined with vaccines (he has to keep vaccines in the loop). Given the rarity of such mutations, and the fact that there were specific features in this case that would likely be uncovered in the routine evaluation of a child with autism (like an elevated lactic acid), it is highly unlikely that there are many children with vaccine-triggered mitochondrial encephalopathy mimicking autism out there.
It has been found that some children with autism have mitochondrial dysfunction - one study found that 7.2% of subjects with autism had “definite mitochondrial respiratory chain disorder.” Poling et al, in response to this child’s case, did a retrospective study of children with autism and with other neurological disorders and found that “Aspartate aminotransferase was elevated in 38% of patients with autism compared with 15% of controls.” Such findings are preliminary - the only conclusions that can be drawn is that the association between autism and metabolic disorders requires further investigation. However, these studies did not look at the incidence of suspicious mitochondial mutations in autism, and these findings may not be relevant to this case.
Kirby also wildly speculates that perhaps the evil toxins in vaccines caused the mutation in the first place. He writes:
Use of the AIDS drug AZT, for example, can cause Mt disorders by deleting large segments of mitochondrial DNA. If that is the case, might other exposures to drugs or toxins (i.e., thimerosal, mercury in fish, air pollution, pesticides, live viruses) also cause sporadic Mt disease in certain subsets of children, through similar genotoxic mechanisms?
Among stiff competition, this is perhaps the most absurd and scientifically ignorant thing Kirby has every written. AZT does NOT cause a genetic disorder. AZT blocks DNA replication (it blocks the copying of DNA) - that is its mechanism as an anti-retroviral drug. In patients it can also block mitochondrial DNA replication, thereby causing mitochondrial depletion. This results in there being too few mitochondria (the energy factories of cells) in some cell populations and causes dysfunction in tissue that is especially susceptible to the effects of this dearth of mitochondria. This is a side effect of AZT and also other retrovirals because of sustained use at doses designed to inhibit DNA replication. This does result in some effects that are similar to mitochondrial genetic disorders - because both result in insufficient mitochondrial activity. But that is the only similarity. AZT does not cause a disseminated somatic mutation, which is the incredible analogy that Kirby is making.
What Kirby is suggesting is that in infants and toddlers toxins can cause the same point mutation in millions of different cells throughout the body. Toxin-induced mutations do not cause genetic diseases, unless they occur in a germ cell in which case a mother or father can pass the mutation onto their children. If it occurs in the womb then large cell populations may be affected (whatever cells derive from the cell that had the mutation). But in a child a point mutation would affect only one cell and any cells that derive from it. A toxic mutagen would cause different random point mutations in different cells. This could not cause the mitrochondrial encephalopathy in this child. It can increase the risk of cancer, because cancer can develop from a single mutation in a single cell that causes it to become neoplastic.
Conclusion
This is a unique and idiosyncratic case that raises more questions than it answers. In my opinion as a neurologist, with the information provided, the child has a mitochondrial encephalopathy. The role of the vaccines is unclear, but at worst a rare vaccine reaction exacerbated the underlying mitochondrial disorder. This case has no clear implication for the larger question concerning vaccines and autism, which is likely why both sides agreed to settle.
Yet those who insist, despite the evidence, on claiming that vaccines or mercury are linked to autism are likely to add this permanently to their litany of misinformation and fear-mongering.
Note: I am searching for any follow up information pertinent to this case and will post any addendum here.
DR. JON POLING TO DR. STEVEN NOVELLA ON AGE OF AUTISM
PolingsBy Dr. Jon Poling, father of Hannah Poling.
OPEN LETTER TO DR. STEVEN NOVELLA IN RESPONSE TO "Has the Government Conceded Vaccines Cause Autism?"
Dr. Novella,
Thank you for generating interesting discussion regarding my little girl, Hannah Poling. I would like to give you additional information in order to generate further productive discussions on this matter amongst the neurology community. This information should assist you, Dr. DiMauro, and Dr. Trevethan, who have also commented publicly, to formulate better theories as to the significance of Hannah’s mitochondrial dysfunction in relation to her autism.
1. Mito Dysfunction or Mito Disease? Chicken or Egg?
To begin with, I would like to point out that the spectrum of mitochondrial dysfunction is probably considered more broad and complex than the spectrum of neurobehavioral abnormalities seen with autism. Dysfunction of the mitochondria, specifically dysfunction of the oxidative phosphorylation pathway, most likely contributes, but may not be the cause of many diseases—including Parkinson’s disease, Friedreich’s Ataxia, Alzheimer disease, etc. Thus, it is probably incorrect to refer to mitochondrial dysfunctional and mitochondrial disease interchangeably. Indeed, the role of the dysfunctional mitochondrial are yet to be clarified in these diseases. Thus, I will refer to Hannah’s metabolic condition as a mitochondrial dysfunction, not a mitochondrial disease.
ADDITIONAL GENETIC TESTING NOT AVAILABLE IN THE J CHILD NEUROL CASE REPORT: Dr. Shoffner performed genetic testing on both Hannah’s muscle and her mother’s leukocytes subsequent to our case report. Hannah (muscle mtDNA) and her mother (leukocyte mtDNA) were both found to be HOMOPLASMIC for the mtDNA T2387C transition mutation. Our analysis of this genetic finding in the mtDNA was significantly different than those of other physicians that I’ve seen in scientific blogs or commentary. I suspect it would have been fatal to both Hannah and her mother if this homoplasmic mutation was pathogenic since (as I am sure you are aware) the mutation is on the 16S ribosomal subunit which is highly conserved. Thus, this mutation probably represents a benign polymorphism rather than pathogenic mutation. It is unlikely, but possible, that the mutation is significant to Hannah, but in such a case, it must work in concert with other nuclear genes to cause her mitochondrial dysfunction. To our knowledge, this point mutation has not been reported in cases similar to Hannah’s.
3. Encephalitis? Metabolic Encephalopathy? Or “Regressive Encephalopathy with Features of Autism Spectrum Disorder”
The other interesting term you used was encephalitis rather than encephalopathy. We are not sure that she had an “-itis” but we did clearly document a regressive encephalopathy based on not only our parental reporting, but also based on the pediatrician’s documents, affidavits from other family members, and the growth curve measurements (injury pattern). Early on in the regression we did note back arching (opisthotonus), fever, and disrupted sleep. Although fever occurred a lumbar puncture was not performed.
An interesting developing story in autism research is the immune/inflammatory connection. In her senior resident thesis, Dr. Anne Comi, a former JHU colleague, along with Dr. Andy Zimmerman, reported, the increased prevalence of autoimmune disease in families of autistic offspring. Interesting, Hannah also has a maternal family history of autoimmune disease. Dr. Carlos Pardo, another one of my former chief residents, along with Andy and Dr. Vargas, published a beautiful study in the Archives of Neurology, demonstrating neuroinflammation on autopsy of brain samples and inflammation cytokine markers in the CSF of individuals with Autism. The interesting thing was that inflammation was demonstrated in autopsy specimens from adults as old as 44 years of age. The conclusion was that further research would be required to determine if inflammation was a primary disorder in autism or; alternatively, if inflammation and microglial activation was secondary to neurodegeneration. Dr. Sudhir Gupta at UC Irvine has a nice model of how the two pathways of neuroinflammation and mito dysfunction may not be mutually exclusive. This remains to be seen; however, study of mitochondrial dysfunction and neuroinflammation hold the promise of treatment development. The two avenues of research deserve funding at the highest levels.
4. How many Hannah Polings are out there?
The short answer is that nobody knows. However, there is emerging data to suggest that she is not alone.
Dr. Shoffner will be presenting his experience with 37 patients with combined autism and mitochondrial dysfunction at the AAN meeting in Chicago this April. 65% of his referrals are positive for mitochondrial dysfunction. Of course, his yield is subject to referral bias as a mito expert, so the prevalence of mitochondrial dysfunction in Autism is surely less than 65%.
The best estimate to date of the prevalence of mitochondrial dysfunction in autistic patients comes from Oliviera et al. in a population of 120, 5 of 69 (or 7.2%) showed mitochondrial dysfunction. If this is generalized to the US estimate of 1 million patients with ASDs, then the number of kids like Hannah could be 72,000! Isn’t this worth further study?
Dr. Shoffner furthermore advocates, along with us, that vaccination is important even for kids with mitochondrial dysfunction. I would argue that you should not give nine at one time and that none of them should contain Thimerosal (mercury).
5. Thimerosal—On or Off the Table?
I don’t want to dwell on mercury, as this theory is not why HHS conceded Hannah’s case (imo). Dr. DiContanzo just wrote an interesting blog about how his opinion of mercury in vaccines has changed (http://drugs.about.com/b/2008/03/08/mercury-in-vaccines-and-autism-the-burden-of-proof-may-shift.htm).
My opinion is that mercury is a potent neurotoxin. Therefore, don’t inject it into kids! Interestingly, basic research studies have shown that Thimerosal toxicity occurs through mitochondrial pathways. Officials point to the large epidemiology studies as proof that there is no link between thimerosal and autism. However, these studies are not powered to disprove the null hypothesis when considering that the mitochondrial autistic population may be just a small percent of the case totals. Remember that while the CDC sponsored Verstraten study is hyped as a negative study, it DID find a statistically significant increase in childhood tics in those exposed to higher doses of thimerosal.
6. Hannah was destined to regress? Or was she?
Some experts have already stated that ‘mitochondrial disease’ is degenerative so the vaccine reaction was just the start of an inevitable decline. This was neither the opinion of Dr. Richard Kelley at KKI nor Dr. John Shoffner. In fact, the markers that led us down the mitochondrial trail (inc AST but not ALT, low serum bicarbonate, and slight increased CK, increase in the alanine to lysine ratio on PAA) are no longer present. Furthermore, in our pilot study (unpublished but mentioned in the J child neurol paper), Dr. Frye (the statistician for our study and also a child neurologist) found a non-significant trend that AST decreased toward normal with increasing age. With further studies we hoped to examine the hypothesis that this abnormality may be representative of a developing/immature biochemical pathway present in some children.
7. Triple Hit Hypothesis—#1Underlying genetic susceptibility #2Insult must occur during specific developmental period #3 A certain vaccination or combination thereof is the environmental trigger (?vaccine component like thimerosal ?direct immune stim/fever reaction ?live virus reaction?)
The implication is that Hannah’s type of autism requires a genetic susceptibility and properly timed insult to manifest disease. We have not subjected Hannah to another muscle biopsy or re-examined ox phos functional assays that were published in the paper. I can inform your readers though that the serum biochemical markers have resolved, growth resumed and continues along a normal trajectory, and there have been no other episodes of regression since 2000. We are however left with autism and later in 2006, epilepsy. It is recommended that studies be initiated immediately to screen siblings of cases to identify biochemical markers so as to identify potential screening tests.
I agree with the mainstream that my daughter’s case has raised many intelligent discussions and questions. I’m very proud of her for starting this discussion. Our hope is that further research into this case and others like it, we will be also to find screening tests to prevent what happened to my daughter from happening to anybody else.
(Dr. Poling acknowledges the editorial comments and insightful suggestions of Dr. Richard E. Frye. He also would like to declare his conflicts of interest. First of all, he is the father of Hannah Poling. Dr. Poling has also accepted consultancy or speakers honoraria from Pfizer, Eisai, Ortho-McNeil, Biogen, Teva, Immunex (now Amgen), and Allergan.)
PS While I thought it useful to clarify some of the neurological issues raised by the government's concession of my daughter's case, please understand that I will not be able to respond to individual comments posted. Thank-you. Jon
