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Archive for the ‘Autism’ Category

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In a very pleasing announcement yesterday on World Autism Day the American Academy of Pediatrics (AAP) announced that they will be partnering with Defeat Autism Now! (DAN!) in order to more efficiently diagnose and treat children with Autism. It is one of many pleasing partnerships that the AAP is making that is sure to change the tide in getting parents and their pediatricians to be better able to assist one another and to get them to be on the same team, so to speak. I can just hear parents of autistic children shouting for joy over this announcement. Something I’m sure many of them thought they would never live to see the day when this occurred. It also makes me wonder what the ramifications on this type of partnership will be on insurance companies that often refuse to cover treatment for DAN! doctors. With the AAP and DAN! working in partnership I could see the possibility of change in that regard, as well.

Ironically, in the not so distant past, DAN! was viewed with very little regard and often ridiculed and touted as medical “quacks” for their approaches to the treatment of autism despite the countless children that had benefited from DAN! research and treatment.

You can view the article at the American Academy of Pediatrics and it is also pasted below. I learned about this announcement through Adventures in Autism. DAN! is a program that the Autism Research Institute offers. You can also visit the Autism Research Institute to learn more about the DAN! program.

ARTICLE HERE:

AMERICAN ACADEMY OF PEDIATRICS RECOGNIZES WORLD AUTISM DAY


For immediate release: April 1, 2008CHICAGO – The American Academy of Pediatrics (AAP) supports World Autism Day (April 2) as a way to bring together groups that are committed to finding the causes of, and successful treatments for Autism Spectrum Disorders, which now affect an estimated 1 in 150 children in the United States. Thousands of children, parents and families are coping with what can be a devastating diagnosis with lifelong consequences.

Pediatricians care for children with autism and their families every day. They are passionate advocates on behalf of these families and recognize that autism is a significant challenge to the health of the nation’s children. Pediatricians emphasize that early diagnosis is critical. The AAP promotes regular screening for autism at the appropriate well-child visits, as well as treatments tailored to meet the needs of an individual child. In 2007, the AAP published the Autism Toolkit, which includes clinical guidance to help pediatricians identify and manage children with autism, to refer them to therapeutic services, and to provide parents with information and resources. The AAP also offers a host of resources for parents on its Web site, Autism Health Topics Page.

“We know many parents are searching for answers,” said AAP President Renee R. Jenkins, MD, FAAP. “The AAP has supported research into the causes of autism and will continue to do so.” Pediatrics, the Academy’s peer-reviewed, scientific journal, has included dozens of studies on the associated factors, management and impact of Autism Spectrum Disorders.

The AAP recognizes the best way to address the needs of children with autism and children overall is through a partnership among pediatricians, parents and researchers. The AAP has met with leaders of advocacy groups, such as Autism Speaks and the Autism Society of America, which include parents of children with autism. Most recently, the AAP met with representatives of Defeat Autism Now! (a program of the Autism Research Institute) in an effort to facilitate communication between pediatricians, parents and researchers about the diagnosis and treatment of children with autism. All advocates for these children agree that further research is needed regarding causes as well as safe and effective treatment.

“We are pleased the AAP reached out recently to Defeat Autism Now! in order to better understand the treatments and interventions that we have found beneficial to children with autism,” said Stan Kurtz, executive council member of Defeat Autism Now! “We are full of hope that this is the beginning of a thoughtful partnership that will further explore factors that might cause or contribute to autism, as well as examine safe and effective treatment approaches for families coping with this condition.”

For more information about autism, visit www.aap.org.

# # #

The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well being of infants, children, adolescents and young adults.

The Autism Research Institute (ARI) is a non-profit organization established in 1967 that fosters scientific research on autism triggers as well as diagnostic, treatment, and prevention methods. Through its Defeat Autism Now! program, ARI provides research-based information to parents, clinicians, and researchers worldwide, through its Web site (autism.com), call center, parent groups, conferences, science-based publications, and think tanks.

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So I stayed up until three in the morning last night watching this documentary. It was moving and brought me to tears several times. It was uplifting and heartbreaking at the same time. I can only imagine the living Hell that these parents have to call life and yet they carry on and fight the fight and are blessed with moments of happiness and big and small triumphs. But the rest of us that don’t live with these children want to turn our heads and ignore the issue, it’s not my child we say. So who will take care of these thousands and thousands of children when their parents are gone?

For me, one of the most poignant parts of the film is where one of the mothers, Hillary, says to the others that the issue of Autism isn’t a civil rights issue (as one parent asserts that it is), it’s a values issue. She very passionately points out that until these children are valued as real and living human beings that nothing will change, not the chemicals in the vaccines, not the research, not the schools’ ability to incorporate a real learning environment, and not the insurance companies. If anyone has this quote please let me know so I can paste it here. The streamed movie doesn’t let you skip around.

Such a powerful movie. I hope you will find the time to watch it.

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Below is some interesting information in the recent developments of the vaccine-autism link.

The following information was shared in a conference call between the CDC, several leading experts in vaccine research and executives in America’s Health Insurance Plans to discuss childhood mitochondrial dysfunction and its potential link to autism and vaccines.

Undoubtedly more developments will be coming up over the next several months. Thank you so much Adventures in Autism for staying on top of this. This blog is such a wealth of information that narrows down my internet searches. David Kirby is the source who broke the information on this conference call.

Here is the full article. Here is the PubMed Portugal study that is getting the CDC to take notice (full abstract HERE)
Here are the bullet points of David Kirby’s article broken down into a more easier to understand manner:

“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.”

**Also interesting. Of the 30 children with regressive autism that were screened ALL 30 of them had the same biochemical markers as Hannah Poling (the one they say is such a rare situation).

“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.”

** Autism: The Musical ** HBO has just released a new documentary called Autism: The Musical. It is streaming for free on HBO for the next week if you care to view it.

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Larry King Live Interview with Jon & Terry

Larry King Live Discussions about the Case

Link to more video:

Here are some videos covering the Larry King Live interview with Dr. Jon Poling and his wife Terry Poling, the parents of the little girl that recently had a Vaccine Court concede her case connecting her autism diagnosis with the vaccines she received as a toddler.

Some observations:

* I find it interesting that these parents still wholeheartedly endorse and recommend the standard vaccine schedule. They admit that they are not safe for everyone but when being interviewed by Larry King they share no sentiments to parents that they should be cautious or fearful of vaccines when given in the currently recommended fashion and timetable. It causes me to wonder if these are their true sentiments or if this is somehow related to the requirements of the concession itself or if other big dollars and pressure is under these comments.

* The case was conceded before a trial was ever held. In other words, the family never had a chance to present their case to trial in May as originally designed. Then the case was sealed so that the information being presented could not be made public.

* From what I have heard two theories were being presented in the case. The first theory is that the mitochondrial disorder was a genetically predisposed disorder that was aggravated by the vaccines that the child received. The second theory was that the mitochondrial disorder was caused by vaccines, namely thimerosol. However, the case was conceded before trial even began and then the details sealed from public view. It makes one wonder if the theory they were presenting (theory 2) had such compelling evidence to suggest that vaccines itself created this mitochondrial disorder that they felt it imperative to settle the case and seal the records before it could be properly presented and therefore leaked to the public. They purport that the information is being sealed to protect confidentiality, however the parents of the child have shared that they wish the case to be made public.

*All in all, my spidey senses are telling me that there is much more to this case than has been shared. Why on earth would the government want to pay out on a case that not only undermines the vaccine industry but sets a potentially devastating precedent in vaccine court lawsuits. I smell a rat.

I mean, come on. Do you really expect parents to just roll over and swallow the whole We’ve conceded this case but vaccines have nothing to do with autism, keep on about your business. Seriously? I know there are the sheep parents that will hear these statements and accept them at face value. But how can you honestly expect parents not to be suspect of something amiss? Yes, we conceded a case that puts autism and vaccines in the same sentence. But no, you can’t look at the evidence, we’ve sealed it. Don’t worry this doesn’t affect you or your children. Keep on vaccinating. Nothing to look at here. Trust us, we’d let you know if vaccines were a danger.

Sigh.

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A picture of Camden having an allergic reaction to
peanut. She became allergic to at least 5 different foods
within a week of her immunizations.

 

Many of you know that we stopped vaccinating Camden at 14 months of age after witnessing a severe deterioration in her health following her 12 month immunizations (which were given at 14 months). After watching my own daughters immune system fight to cope with a massive onset of food allergies within a week of her immunizations, I delved into research. It changed my life forever, to say the least. More importantly it caused me to no longer accept medicine or medicinal practices at face value. I learned that inevitably I am in charge of my child’s health and all though there are many health professionals out there to assist me in the process that it is I who must live with the results of the medical decisions that I make on a daily basis.

I consent that there is very little scientific research at this point connecting the large rise in food allergies to vaccines. Some interesting studies and research have been done but not nearly enough to scientifically prove a causation. Then again, the research has hardly been done at all. There is little funding for such research and like any other suspected reactions to vaccines I can only suspect that I will never have a final answer. Among masses of other parents I am left to struggle with what research there is, what my parenting intuition and experience tells me and the left is left up to prayer.

The Vaccine-Autism link has been argued back and forth for over a decade now. All though there has been no definitive connection (and some argue none whatsoever) between autism and vaccines it has nonetheless caused many parents to research, halt or delay the recommended vaccine schedule. Autism, of course, is only one of the many reasons parents have come to question the current vaccine schedule (or vaccines themselves) but it has definitely received the most attention.

In an interesting twist last month the government conceded it’s first case awarding compensation for a family that presented their case in “Vaccine Court.” The settlement has left a lot of unanswered questions however because of the way that the court established the basis of compensation. They have stated that the child had a pre-existing mitochondrial disorder that was aggravated by her vaccinations thus resulting in an ASD diagnosis.

I would also question, which came first? The chicken or the egg? In other words, did the mitochondrial disorder come first or did autism (and the development of a mitochondrial disorder) come first. In addition, is it possible that the mitochondrial disorder is environmentally driven or was this a condition the child was born with. Meaning, is there something else in the environment (vaccine, diet or otherwise) that promoted the development of the mitochondrial disorder in the first place, if it indeed preceded the autism.

I found David Kirby’s article very helpful in addressing this case and it’s possible implications. All though I think this could possibly be a positive step in at least identifying to the general public that vaccines can pose a risk and hopefully become a catalyst for more research and study into the possible ramifications of vaccines, I hardly think it is the step forward that we wish it would be. Personally, I would not be shocked to see this flipped around and used as a tool to justify the validity and safety of vaccines as long as you don’t have an underlying mitochondrial disorder. Thus, possibly providing a false sense of security to parents who are concerned about the possible health risks that vaccines may pose. I hope that it becomes more, I hope that it is the fuel to set off a wildfire of research and acceptance that vaccines can and do pose harm to some children the way they are currently manufactured and the schedule in which they are now recommended.

Here is the article written by David Kirby. It was obtained from HuffingtonPost.com

After years of insisting there is no evidence to link vaccines with the onset of autism spectrum disorder (ASD), the US government has quietly conceded a vaccine-autism case in the Court of Federal Claims.The unprecedented concession was filed on November 9, and sealed to protect the plaintiff’s identify. It was obtained through individuals unrelated to the case.The claim, one of 4,900 autism cases currently pending in Federal “Vaccine Court,” was conceded by US Assistant Attorney General Peter Keisler and other Justice Department officials, on behalf of the Department of Health and Human Services, the “defendant” in all Vaccine Court cases.The child’s claim against the government — that mercury-containing vaccines were the cause of her autism — was supposed to be one of three “test cases” for the thimerosal-autism theory currently under consideration by a three-member panel of Special Masters, the presiding justices in Federal Claims Court.Keisler wrote that medical personnel at the HHS Division of Vaccine Injury Compensation (DVIC) had reviewed the case and “concluded that compensation is appropriate.”The doctors conceded that the child was healthy and developing normally until her 18-month well-baby visit, when she received vaccinations against nine different diseases all at once (two contained thimerosal).Days later, the girl began spiraling downward into a cascade of illnesses and setbacks that, within months, presented as symptoms of autism, including: No response to verbal direction; loss of language skills; no eye contact; loss of “relatedness;” insomnia; incessant screaming; arching; and “watching the florescent lights repeatedly during examination.”Seven months after vaccination, the patient was diagnosed by Dr. Andrew Zimmerman, a leading neurologist at the Kennedy Krieger Children’s Hospital Neurology Clinic, with “regressive encephalopathy (brain disease) with features consistent with autistic spectrum disorder, following normal development.” The girl also met the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) official criteria for autism.In its written concession, the government said the child had a pre-existing mitochondrial disorder that was “aggravated” by her shots, and which ultimately resulted in an ASD diagnosis.

“The vaccinations received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder,” the concession says, “which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of ASD.”

This statement is good news for the girl and her family, who will now be compensated for the lifetime of care she will require. But its implications for the larger vaccine-autism debate, and for public health policy in general, are not as certain.

In fact, the government’s concession seems to raise more questions than it answers.

1) Is there a connection between vaccines, mitochondrial disorders and a diagnosis of autism, at least in some cases?

Mitochondria, you may recall from biology class, are the little powerhouses within cells that convert food into electrical energy, partly through a complex process called “oxidative phosphorylation.” If this process is impaired, mitochondrial disorder will ensue.

The child in this case had several markers for Mt disease, which was confirmed by muscle biopsy. Mt disease is often marked by lethargy, poor muscle tone, poor food digestion and bowel problems, something found in many children diagnosed with autism.

But mitochondrial disorders are rare in the general population, affecting some 2-per-10,000 people (or just 0.2%). So with 4,900 cases filed in Vaccine Court, this case should be the one and only, extremely rare instance of Mt disease in all the autism proceedings.

But it is not.

Mitochondrial disorders are now thought to be the most common disease associated with ASD. Some journal articles and other analyses have estimated that 10% to 20% of all autism cases may involve mitochondrial disorders, which would make them one thousand times more common among people with ASD than the general population.

Another article, published in the Journal of Child Neurology and co-authored by Dr. Zimmerman, showed that 38% of Kennedy Krieger Institute autism patients studied had one marker for impaired oxidative phosphorylation, and 47% had a second marker.

The authors — who reported on a case-study of the same autism claim conceded in Vaccine Court — noted that “children who have (mitochondrial-related) dysfunctional cellular energy metabolism might be more prone to undergo autistic regression between 18 and 30 months of age if they also have infections or immunizations at the same time.”

An interesting aspect of Mt disease in autism is that, with ASD, the mitochondrial disease seems to be milder than in “classic” cases of Mt disorder. In fact, classic Mt disease is almost always inherited, either passed down by the mother through mitochondrial DNA, or by both parents through nuclear DNA.

In autism-related Mt disease, however, the disorder is not typically found in other family members, and instead appears to be largely of the sporadic variety, which may now account for 75% of all mitochondrial disorders.

Meanwhile, an informal survey of seven families of children with cases currently pending in Vaccine Court revealed that all seven showed markers for mitochondrial dysfunction, dating back to their earliest medical tests. The facts in all seven claims mirror the case just conceded by the government: Normal development followed by vaccination, immediate illness, and rapid decline culminating in an autism diagnosis.

2) With 4,900 cases pending, and more coming, will the government concede those with underlying Mt disease — and if it not, will the Court award compensation?

The Court will soon begin processing the 4900 cases pending before it. What if 10% to 20% of them can demonstrate the same Mt disease and same set of facts as those in the conceded case? Would the government be obliged to concede 500, or even 1,000 cases? What impact would that have on public opinion? And is there enough money currently in the vaccine injury fund to cover so many settlements?

When asked for a comment last week about the court settlement, a spokesman for HHS furnished the following written statement:

“DVIC has reviewed the scientific information concerning the allegation that vaccines cause autism and has found no credible evidence to support the claim. Accordingly, in every case under the Vaccine Act, DVIC has maintained the position that vaccines do not cause autism, and has never concluded in any case that autism was caused by vaccination.”

3) If the government is claiming that vaccines did not “cause” autism, but instead aggravated a condition to “manifest” as autism, isn’t that a very fine distinction?

For most affected families, such linguistic gymnastics is not so important. And even if a vaccine injury “manifested” as autism in only one case, isn’t that still a significant development worthy of informing the public?

On the other hand, perhaps what the government is claiming is that vaccination resulted in the symptoms of autism, but not in an actual, factually correct diagnosis of autism itself.

4) If the government is claiming that this child does NOT have autism, then how many other children might also have something else that merely “mimics” autism?

Is it possible that 10%-20% of the cases that we now label as “autism,” are not autism at all, but rather some previously undefined “look-alike” syndrome that merely presents as “features” of autism?

This question gets to the heart of what autism actually is. The disorder is defined solely as a collection of features, nothing more. If you have the features (and the diagnosis), you have the disorder. The underlying biology is the great unknown.

But let’s say the government does determine that these kids don’t have actual “autism” (something I speculated on HuffPost a year ago). Then shouldn’t the Feds go back and test all people with ASD for impaired oxidative phosphorylation, perhaps reclassifying many of them?

If so, will we then see “autism” cases drop by tens, if not hundreds of thousands of people? Will there be a corresponding ascension of a newly described disorder, perhaps something like “Vaccine Aggravated Mitochondrial Disease with Features of ASD?”

And if this child was technically “misdiagnosed” with DSM-IV autism by Dr Zimmerman, how does he feel about HHS doctors issuing a second opinion re-diagnosis of his patient, whom they presumably had neither met nor examined? (Zimmerman declined an interview).

And along those lines, aren’t Bush administration officials somewhat wary of making long-distance, retroactive diagnoses from Washington, given that the Terry Schiavo incident has not yet faded from national memory?

5) Was this child’s Mt disease caused by a genetic mutation, as the government implies, and wouldn’t that have manifested as “ASD features” anyway?

In the concession, the government notes that the patient had a “single nucleotide change” in the mitochondrial DNA gene T2387C, implying that this was the underlying cause of her manifested “features” of autism.

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.

What’s more, there is no evidence that this girl, prior to vaccination, suffered from any kind of “disorder” at all- genetic, mitochondrial or otherwise. Some forms of Mt disease are so mild that the person is unaware of being affected. This perfectly developing girl may have had Mt disorder at the time of vaccination, but nobody detected, or even suspected it.

And, there is no evidence to suggest that this girl would have regressed into symptoms consistent with a DSM-IV autism diagnosis without her vaccinations. If there was such evidence, then why on earth would these extremely well-funded government attorneys compensate this alleged injury in Vaccine Court? Why wouldn’t they move to dismiss, or at least fight the case at trial?

6) What are the implications for research?

The concession raises at least two critical research questions: What are the causes of Mt dysfunction; and how could vaccines aggravate that dysfunction to the point of “autistic features?”

While some Mt disorders are clearly inherited, the “sporadic” form is thought to account for 75% of all cases, according to the United Mitochondrial Disease Foundation. So what causes sporadic Mt disease? “Medicines or other toxins,” says the Cleveland Clinic, a leading authority on the subject.

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 the prime cellular targets of mercury are mitochondria, and thimerosal-induced cell death has been associated with the depolarization of mitochondrial membrane, according to the International Journal of Molecular Medicine among several others. (Coincidently, the first case of Mt disease was diagnosed in 1959, just 15 years after the first autism case was named, and two decades after thimerosal’s introduction as a vaccine preservative.)

Regardless of its cause, shouldn’t HHS sponsor research into Mt disease and the biological mechanisms by which vaccines could aggravate the disorder? We still do not know what it was, exactly, about this girl’s vaccines that aggravated her condition. Was it the thimerosal? The three live viruses? The two attenuated viruses? Other ingredients like aluminum? A combination of the above?

And of course, if vaccine injuries can aggravate Mt disease to the point of manifesting as autism features, then what other underlying disorders or conditions (genetic, autoimmune, allergic, etc.) might also be aggravated to the same extent?

7) What are the implications for medicine and public health?

Should the government develop and approve new treatments for “aggravated mitochondrial disease with ASD features?” Interestingly, many of the treatments currently deployed in Mt disease (i.e., coenzyme Q10, vitamin B-12, lipoic acid, biotin, dietary changes, etc.) are part of the alternative treatment regimen that many parents use on their children with ASD.

And, if a significant minority of autism cases can be linked to Mt disease and vaccines, shouldn’t these products one day carry an FDA Black Box warning label, and shouldn’t children with Mt disorders be exempt from mandatory immunization?

8) What are the implications for the vaccine-autism debate?

It’s too early to tell. But this concession could conceivably make it more difficult for some officials to continue insisting there is “absolutely no link” between vaccines and autism.

It also puts the Federal Government’s Vaccine Court defense strategy somewhat into jeopardy. DOJ lawyers and witnesses have argued that autism is genetic, with no evidence to support an environmental component. And, they insist, it’s simply impossible to construct a chain of events linking immunizations to the disorder.

Government officials may need to rethink their legal strategy, as well as their public relations campaigns, given their own slightly contradictory concession in this case.

9) What is the bottom line here?

The public, (including world leaders) will demand to know what is going on inside the US Federal health establishment. Yes, as of now, n=1, a solitary vaccine-autism concession. But what if n=10% or 20%? Who will pay to clean up that mess?

The significance of this concession will unfortunately be fought over in the usual, vitriolic way — and I fully expect to be slammed for even raising these questions. Despite that, the language of this concession cannot be changed, or swept away.

Its key words are “aggravated” and “manifested.” Without the aggravation of the vaccines, it is uncertain that the manifestation would have occurred at all.

When a kid with peanut allergy eats a peanut and dies, we don’t say “his underlying metabolic condition was significantly aggravated to the extent of manifesting as an anaphylactic shock with features of death.”

No, we say the peanut killed the poor boy. Remove the peanut from the equation, and he would still be with us today.

Many people look forward to hearing more from HHS officials about why they are settling this claim. But whatever their explanation, they cannot change the fundamental facts of this extraordinary case:

The United State government is compensating at least one child for vaccine injuries that resulted in a diagnosis of autism.

And that is big news, no matter how you want to say it.

NOTE: Full text of the government’s statement is posted here.

David Kirby is the author of “Evidence of Harm – Mercury in Vaccines and the Autism Epidemic, A Medical Controversy” (St. Martins Press 2005.

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