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http://www.medwire-news.md/news/article.aspx?k=51&id=37660

Analysis of home videos has provided evidence to back up parents' claims that some autistic children initially develop normally, before regressing as toddlers.

Some parents of children with autism maintain that their infant had normal or near-normal development until 15 to 24 months old, before experiencing a regression in communication or social skills.

Researchers from the University of Washington in Seattle, USA, who looked at video footage of autistic children when they were aged between eight and 12 months, say: "Whilst we cannot be certain from these data that children with autistic regression were developing normally before the regression occurred, the results of the present study suggest that at least some children with autism do not display prototypical impairments in joint attention... nor do they display obvious delays in their use of language."

Home video footage of 56 children as babies was assessed by the investigators. Thirty-six of the children had since been diagnosed with autistic spectrum disorders, although in 15 of these cases the parents maintained that signs of autism were not apparent until the second year of life. The remaining 20 children showed ordinary patterns of development.

Focusing on the frequency and duration of behaviours such as language, gaze, repetition, emotion and play, the researchers were able to compare early development between the three groups. They also interviewed the parent or guardian who provided most care for the child in the early years about social responsiveness, language skills and temperament.

Children who experienced regression were comparable to normally-developing children in terms of how frequently they communicated with babble or words and engaged with joint attention, such as pointing. However, these activities were found less frequently in the footage of the 21 children with early-onset autism, it is reported in the latest issue of the Archives of General Psychiatry.

Speaking to MedWire, Professor Geraldine Dawson, co-author of the study, said the research highlights the importance of continuing to check for autism during the toddler years.

"The more we understand about the early course of autism and possible subtypes of autism, the more likely we will be able to identify the different causes of autism," she commented.

"I was not surprised by the findings," added Professor Dawson. "Historically, research has shown that parents are generally reliable reporters on their children's development.

"This is another case in which parents' observations turned out to be correct."

Thoughtful House scientists and collaborators confirm link between autism and new inflammatory bowel disease

Austin, Texas  – In a study that provides further clues to understanding the origins of autism, scientists and physicians from Thoughtful House Center for Children in Austin, Texas, supply considerable evidence of a new inflammatory bowel disease in children with autism. The study will be published this month in the European Journal of Gastroenterology and Hepatology. (this is posted at http://thoughtfulhouse.org/pub_06.htm)

The team studied 178 children undergoing intestinal investigation for gastrointestinal symptoms such as diarrhea and abdominal pain. More than 140 of these children also had autism, most having regressed after normal early development. The children with autism had an increased rate of swelling of the intestinal lymph glands (lymphoid nodular hyperplasia) – a feature of viral infections and immunodeficiency diseases such as AIDS.

Additionally, the children with autism experienced associated inflammation of the intestinal lining, while the children examined in the study without autism did not. The degree of swelling of the intestinal lymph glands was also more severe in children with autism compared with developmentally normal children.

“The results of this study give us additional clues on understanding what is going on in the gut and how it may lead to the brain disorder,” says Dr. Andrew Wakefield, Executive Director of Thoughtful House and the lead author on the paper. “We are working on the idea that what starts in the intestine can be severely disruptive to normal brain development.”

The paper dispels the common misconception that the presence of swollen lymph glands is a normal finding in children.

“When we compare the intestinal findings in children with and without autism in a systematic way, the differences become obvious,” says Dr. Wakefield, “Colonoscopies are not performed on normal children, but on children with gastrointestinal symptoms, so it is not possible to state that this is a normal finding. The findings of this new study add to the clear evidence of a novel and treatable disease of the intestinal immune system in children with developmental disorders. These are medical diseases which should be treated as such. Children are suffering needlessly and this has got to change.”     

 The presence and severity of the swollen lymph glands was not influenced by exclusion diets that some children were on, suggesting that food allergy or intolerance was not the cause. The fact that these children also have abnormal immune systems and the resemblance of the disease to the intestinal findings in some patients with HIV infection suggests the disease may be associated with a smoldering viral infection. 

“This study, in combination with previous work, raises the possibility that treating bowel disease may alleviate some of the symptoms of autism itself,” says Dr. Wakefield. “This is something Thoughtful House will be putting to test in the near future.”

http://www.rednova.com/news/health/209322/autism_the_mercury_trail/

Powerful evidence points to a preservative in vaccines as the likely culprit, writes MARGARET COOK

The classic juvenile tactic to get out of a scrape is to deny it vehemently, even if that means claiming black is white. Curiously, governments adopt the same technique, reinforcing their indignant denials with name-calling.

This has been the response from both US and British establishments to parental fears that autism is causally related to vaccines. Andrew Wakefield was sent packing after he suggested MMR vaccines were suspect. His failure to declare an interest in connection with his research was used to destroy his career, even though his lapse pales into insignificance beside the conflicting incentives present in the entire chain of vaccine-policy command from Cabinet Office to consulting room.

But it is more difficult to bully away the question of mercury in vaccines and its putative link with autism. A book published in the US this year, Evidence of Harm by David Kirby, makes a compelling case. Any unbiased doctor who reads it, following the golden rules of listening to the parents' stories and assessing the evidence the book quotes, cannot fail to be persuaded. Yet the response in the British Medical Journal, in a review by Dr Michael Fitzpatrick, is to rubbish it in a hectoring tirade, the theme of which is that parents are not reliable witnesses and the experts know best. How dare the parents side with "credulous journalists" and defy the "authoritative US Institute of Medicine"?

Since 1939 a preservative called thiomersal (thimerosal in the US) has been used in some vaccines, and it contains nearly 50 per cent mercury. Mercury is a nerve-cell poison, but the amounts in vaccines were said to be "traces" only. It was used in, among others, the diphtheria/tetanus/pertussis vaccine given in three doses early in infancy. It is not present in MMR or other vaccines containing live viruses. In the US, pre-school vaccinations are compulsory and, under this blanket, jabs upon jabs were added to make a worryingly crowded programme. It was nearly a decade before the Food and Drug Administration added up the mercury being injected into infants in the first few months of life, and then it found that it was well in excess of federal legal limits even for adults. In 1999 regulators in the US and Europe advised phasing out mercury in childhood vaccines in the shortest possible time - while continuing to deny it was harmful. Believe that if you will.

Autism and related disorders were unknown before 1939. The exponential increase in recent years seems to parallel the rising number of mercury-containing vaccines given at an ever earlier age. The infant blood-brain barrier is not developed until six months of age, and it is to be expected that even minuscule amounts of this cumulative toxin can do harm. A causal association between the metal and autistic disorders is wholly biologically plausible. Epidemiological studies have come up with conflicting results, depending on the mindset of the researcher.

Cause for concern: doctors must listen more to parents

There is evidence that autistic children have a (probably genetic) problem in excreting mercury. It now seems likely that these predisposed children, burdened and immuno-suppressed with toxic metal, then given a dose of MMR live vaccine, suffered a triple whammy causing full-blown autism. The history obtained from parents of children with autism is consistent and should not be dismissed so contemptuously as the reviewer Fitzpatrick did. The story that a child progressed normally until an adverse reaction to a vaccine seemed to tip him or her into a slide into autism is heard again and again.

The extraordinary increase in autism among children - one child in 166 now suffers from an autism spectrum disorder - cannot be explained away by better recognition and diagnosis, as claimed by psychiatrists. If it were so, where are all the adults with covert autism?

So worried was the US government about the mercury question that a rider barring thiomersal litigation was tacked on at the 11th hour to the (unconnected) Homeland Security Bill 2002 - a sign of the US health, federal and industrial establishments ganging up to evade a mercury fallout.

Mercury was removed from UK infant vaccines in 2004. Parents of autistic children in the UK struggle to engage the support of public services, and many find that physical symptoms are ignored. Autism is compartmentalised as a mental illness and doctors tend to leave it to psychiatrists. Gastrointestinal aspects of autism were Wakefield's speciality, and look what happened to him.

Yet this disease needs to be wrested back into mainstream medicine and that will happen only when the establishment seriously addresses the theory of mercury as a contributory cause.

The writer is a retired consultant haematologist, formerly at St John's Hospital, Livingston

GUEST COMMENTARY

IN THE LATE 1990s, Canadian doctor Andrew Wakefield published a remarkable study in The Lancet linking the measles, mumps and rubella vaccine (MMR) to autism. His discovery started a movement against childhood vaccines, one that rapidly gained credibility.

Supporters of Wakefield's argument are educated, passionate and organized. Many have charged the medical establishment with causing their child's illness.

However you feel about childhood immunizations, there is an indisputable fact: Vaccines save lives.

Following the introduction of the Salk vaccine, the incidence of polio dropped by 90 percent and today polio is nearly extinct. Globally, measles is a leading killer of children, but here, thanks to the MMR vaccine, we've eliminated it.

Before the Haemophilus influenzae vaccine was approved, pediatricians routinely admitted children to hospitals with meningitis. If it didn't kill a child, meningitis often caused deafness and developmental delay. Today, bacterial meningitis is so rare that many doctors no longer stock the spinal tap kit necessary to diagnose it.

Despite these successes, there remains a movement against childhood vaccines.

Parents may feel enlightened after listening to the anti-vaccine claims, but they should beware: It was later found that Wakefield's study was funded by parents with autistic children who were suing the manufacturers of the MMR vaccine. In addition, his study only looked at 12 children, which is too small of a group from which to derive conclusions. His article was retracted and he's being investigated for ethics violations. Several well-designed studies prove that there is no link between the MMR vaccine and autism.

Declining shots also is selfish: Suppose a family refuses vaccines. Then they go to Africa, and their child contracts measles. Not only is that parent needlessly risking their child's life with an illness that kills 1 in 10, but that child will expose others to measles.

If that includes yet-to-be vaccinated infants or people with a weakened immunity (which occurs with many chronic illnesses), then those lives are also at risk.

Even if they don't believe the autism link, parents may be duped into thinking their children don't need vaccines, since we've contained many of the illnesses they prevent. But with international visitors, we are exposed to microbes outside our own community. The recent spike in whooping cough cases in the United States has been attributed to the presence of unimmunized immigrants from Mexico and South America.

Many families in my office expressed concern about a Rolling Stone article by Robert F. Kennedy Jr. describing government's efforts to cover up a link between the mercury-based preservative in vaccines, thimerosal, to autism.

It was argued that this form of mercury, ethyl-mercury, accumulates and damages the developing brain, leading to symptoms of autism. (As a safety measure, thimerosal was removed from -- and remains out of -- all required vaccines.) When the Institute of Medicine reviewed all data about thimerosal's safety in 2003, it found no proof of this association.

On the other hand, methyl-mercury, chemically different from thimerosal, is a known neurotoxin and an environmental contaminant. The total methyl-mercury in many fish, for instance, is substantially higher versus that in vaccines.

Unfortunately, in a society where information is so readily available, we forget that even good science needs confirmation. In medicine, it means doing more research.

Instead, unsubstantiated "discoveries" are hurled onto the evening news or the Internet for our consumption. This leads parents astray from sound medical advice and into the cult fringes, which is where the anti-vaccine movement belongs.

Parikh, M.D., F.A.A.P, is a physician at Kaiser Permanente Walnut Creek.

By Elisa Cramer

Palm Beach Post Editorial Writer

Here's why, in the face of government studies to the contrary, parents continue to question whether mercury in vaccines caused or contributed to autism: "These studies can never prove to the point of absolute certainty an absence of an association."

Dr. Harvey Fineberg, president of the Institute of Medicine of the National Academies, acknowledged that point Sunday on NBC's Meet the Press. Dr. Fineberg's institute last year published a 215-page review on immunization safety: vaccines and autism. The report (available at www.iom.edu) concluded, as Dr. Fineberg reiterated Sunday, that "the best evidence all points to the lack of an association." It also underscores why Congress needs to pass the proposed Mercury-Free Vaccines Act, which would stop mercury-containing vaccines from being administered to any child under 3 or any pregnant woman, effective July 1, 2006. By July 1, 2007, the restriction would extend to all children under 6.

The immunizations children are required to have for their safety and for the public's safety — including measles, mumps, rubella, hepatitis, diphtheria — no longer are made with thimerosal, the mercury-containing preservative that's become a household term in many families with preschoolers or school-age children. "Thimerosal-containing vaccines should be removed as soon as possible," the Public Health Service and the American Academy of Pediatrics said in a joint statement in July 1999. "Yet years after the July 1999 statement," the vaccine legislation points out, "thimerosal remains in several non-routinely administered childhood vaccines and many pediatric and adult influenza vaccines."

The legislation (HR 881 in the House, and S 1422 in the Senate) also notes that as many as one in six infants, according to the Environmental Protection Agency, is estimated to be born with a blood mercury level that exceeds what the agency deems is safe. Mercury can damage the brains of unborn children and infants. So, it only makes sense that steps would be taken to reduce exposure to mercury.

The legislation is a sensible precaution, much like the 1999 urging by physicians — a preferable response to the dismissal of a parent as panicked, neurotic, irrational, emotional. I wrote last Friday about the government's poor handling of this issue, and many parents responded with e-mails about their autistic child — or grandchild, or co-worker's child, or friend's child, or neighbor's child. Merely tragic anecdotes, some scientists and doctors say. The parents, they claim, simply are looking for someone or something to blame for their child's unfortunate condition.

After lamenting that she reached me instead of my voice mail, one anonymous pediatrician who called last Friday morning said my column was a "huge disservice to parents and pediatricians," that "the calls have already started" from worried parents and upset physicians. The anonymous pediatrician wanted parents to know, as has been widely published, that Dr. Andrew Wakefield, who in 1998 first hypothesized a link between the Measles Mumps Rubella vaccine and autism, has been soundly discredited. He owned a patent on a single-dose measles vaccine and was paid by lawyers for vaccine-makers to sound an alarm on multiple-dose vaccines.

"It has been unequivocally proven," the anonymous pediatrician continued, that there is no link between mercury in vaccines and autism. "It's been proven 100 percent."

Actually, in this controversy, the only unequivocally proven matter is mercury's danger. Acknowledging that fact is not the same as discouraging parents from getting their children inoculated. In fact, immunizations against polio, chicken pox and, especially, measles have saved countless lives. Those of us young enough to have been spared epidemics need only look at children in developing countries who are unable to enjoy the benefits of such immunizations. Parents should understand that refusing crucial immunizations puts not only your child at risk but other children, as well.

The Mercury-Free Vaccines Act, however, reflects the knowledge that the widespread benefit of immunizations is not a license to invite avoidable, albeit theoretical, risks. Reps. Clay Shaw, R-Fort Lauderdale, and Robert Wexler, D-Delray Beach, are among the House bill's 63 cosponsors. Encourage your representative to join them.

Elisa Cramer (elisa_cramer@pbpost.com)

Transcript from the SHOW:

Mercury - Autism Controversy Airs on Meet The Press

Autism: what we know and what we don't know. Dr. Harvey Fineberg of the Institute of Medicine and David Kirby, author of "Evidence of Harm: Mercury in Vaccines and the Autism Epidemic," a medical controversy were on Sunday on Meet The Press. Here is a transcript of that program.

MR. RUSSERT: Dr. Fineberg, Mr. Kirby, welcome both.
In your book, Mr. Kirby, you raise early on two questions. "Why did the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA) allow mercury exposures from childhood vaccines to more than double between 1988 and 1992 without bothering to calculate cumulative totals and their potential risks? Why ... was there a corresponding spike in reported cases of autism spectrum disorders? Why did autism grow from a relatively rare incidence of 1 in every 10,000 births in the 1980s to 1 in 500 in the late 1990s? Why did it continue to increase 1 in 250 in 2000 and then 1 in 166 today?" Have you answered those questions?

MR. DAVID KIRBY: No, nobody's answered those questions. And we have to answer those questions as soon as possible. We need to solve this mystery. We need to get this controversy behind us so we can go on to find ways to help these kids. Mercury is toxic. It's a known neurotoxin. If it gets into the brain, it could stay there virtually forever. Children born in the '90s received mercury far in excess of federal safety limits. That's indisputable. And yet we're looking at a neurotoxin. And yet most of the evidence developed by the public health sector has been looking at the epidemiology. And we really need to look at what this mercury is doing inside the bodies and brains of these children if we're going to solve this mystery one way or the other.

MR. RUSSERT: Dr. Fineberg, in your 2004 report from the Institute of Medicine, you said this: "While some information suggests that autism rates may be rising, it is not clear whether the observed increase is real or due to factors such as heightened awareness of the disorder or the use of a broader diagnostic definition. ..."

Do you think there's an epidemic of autism or do you think it's simply a change in defining it?

DR. HARVEY FINEBERG: There's definitely a huge number of cases diagnosed with autism, Tim. What is clear is that number recognized has increased dramatically. It's also clear that the definition was broadened markedly in the 1980s and 1990s, and there were increased incentives to recognize children from increased awareness and availability of services.

No one knows with certainty what part of the increase is genuine, a genuine increase in numbers, and what part is from increased recognition of people who were already there but not previously recognized. Remember we're talking about a spectrum of diagnoses here, autism spectrum diseases, which range in severity from relatively mild to relatively severe.

MR. RUSSERT: For a layman, in a few words, how would you explain autism?

DR. FINEBERG: Autism is a severe neurodevelopmental disorder that is characterized by social withdrawal, by repetitive behaviors and by some kind of focal attention in its classic form. Basically, it's an inability to relate to others.

MR. RUSSERT: Let me go back and review two of the studies that the Institute of Medicine did because this has helped feed much of this controversy and discussion. Back in 2001, the headline on your press release was "Link Between Neurodevelopment Disorders And Thimerosal Remains Unclear. Current scientific evidence neither proves nor disproves a link between the mercury-containing preservative thimerosal and neurodevelopmental disorders in children, says a new report from the Institute of Medicine... While very few vaccines given to children in the United States today still contain thimerosal, prudence dictates that precautionary measures be taken to decrease thimerosal exposure even further. ... It is medically plausible that some children's risk of a neurodevelopmental disorder could rise in part through increased mercury exposure from thimerosal-containing vaccines."

Thimerosal being a preservative that is put into the vaccine. Then about three years later in May of 2004, the Institute of Medicine issued this headline: "MMR Vaccine And Thimerosal-Containing Vaccines Are Not Associated With Autism, IOM Report Says. Based on a thorough review of clinical and epidemiological studies"--I always destroy that word--"neither the mercury-based vaccine preservative thimerosal nor the measles-mumps-rubella (MMR) vaccine are associated with autism, says a new report from the Institute of Medicine..."

What changed in those three years?

DR. FINEBERG: When you're dealing with a problem as complex as autism, Tim, you have to look at it from many different points of view and assemble evidence from many different vantage points. Biological evidence in humans and in animals, toxicologic evidence, how does the body deal with toxins, and evidence looking at the actual experience in populations. When the 2001 report was written, there was a lot of suggestive information about the toxic properties of mercury and the problem of autism incompletely understood. By 2004, the main change was that there were completed additional studies that were actually looking in the population at the relationship of receipt of vaccines containing thimerosal and the development of autism.

These studies were carried out in the United States, in Great Britain, in Denmark and Sweden. These studies covered hundreds of thousands of individuals, children, in these populations. They compared systematically in different ways whether you received vaccine with no thimerosal, with some thimerosal, with more thimerosal, and they looked at the relationship of those experiences with the development of autism. Uniformly, the best of those studies all show no association between receiving vaccine of different amounts with thimerosal or without and the development of autism. It was the absence of that association which was the main reason for reaching the conclusion that the evidence points to no association between vaccines and autism.

MR. RUSSERT: Mr. Kirby?

MR. KIRBY: Well, I think those flawed epidemiological studies range from severely flawed to seriously questionable. And I also think that you cannot rely solely on epidemiology to prove or disproof causation. In fact, I have right here--this is from the federal court system, but they ruled that epidemiology is not acceptable to prove there is no causal link between an adverse event and a pharmaceutical.

MR. RUSSERT: Explain that in layman's language.

MR. KIRBY: Well, it means that you really, like the doctor said, you can look at the kids as well as look at the large population studies. You need to look at the biology, the toxicology; you need to look at the cellular level. You need to look at immunology, and I would say that what the IOM did last year--I was at that meeting on February 9. Virtually half of the evidence that was presented against the theory was epidemiological--I have the same problem as you. The other half supporting the theory was largely biological. And yet the committee gave a preponderance of evidence or emphasis to the epidemiological evidence and rather, I would say, gave short shrift to the biological evidence.

Dr. Fineberg has mentioned that there are 215 references in the report. I counted them up. By my count, it's roughly a 2:1 ratio, about

115 references for epidemiology, 60 references for biology, and of those, only seven were toxicological reports. Now, we're talking about a known neurotoxin, and there were no toxicologists on the committee, either. So I think even Dr. McCormick, the chairwoman of the committee, told me that there was definitely an emphasis on the epidemiology over the biological evidence.

MR. RUSSERT: When we announced this program, as you might expect, we heard from both sides who are very emotional and passionate about this topic. The National Autism Associations, Dr. Fineberg, wrote a letter to us including this: "The five studies the Institute of Medicine based its conclusion upon are fatally flawed, have never been replicated and have ties to the CDC"--Center for Disease Control-- "(or foreign equivalent mandating vaccines in other countries) and/or the pharmaceutical industry. However, the Institute of Medicine chose to completely ignore the biological and clinical data supporting the link between thimerosal exposure and injuries to children conducted by independent, appropriately- credentialed researchers."

DR. FINEBERG: Tim, the Institute of Medicine panel that came together represented a spectrum of experts who were asked to look at all of the evidence, and they did. They assessed the evidence that bears on the question. Some of it is biological, as I mentioned; some of it has to depend on what you actually find when you go out and look in the population.

Is there or is there not an association? Keep in mind that there are many neurotoxins in the world. Dozens of natural and industrial substances have neurotoxic properties. When you're trying to assess a specific association, there are biological studies that are relevant, and there are epidemiological studies that are relevant. All of these studies are not equally valid. Some have more deficiencies and limitations than others.

The committee went through very carefully and assessed each of those studies representing its strengths and weaknesses. All of this is laid out in its report, which is available for download to anyone who wants it from the IOM Web site, www.iom.edu. And anyone can read for themselves how the committee evaluated critically and carefully all of this evidence.

When the letter you read states that these five studies were not replicated, I can't help but think that each one of them has been replicated four times. We have now a growing body of evidence, while imperfect, altogether convincing and all reaching the same conclusion, even though they vary in their methods and in their approaches. And that conclusion was no association between the receipt of vaccines containing thimerosal and the development of autism.

MR. RUSSERT: Why was thimerosal then taken out of the vaccination?

DR. FINEBERG: There's no question that mercury is a neurotoxin. And if there were ways, which there are, to protect vaccines without using mercury-containing substances, it was prudent to remove it, not because there was evidence that it caused autism or even definitive evidence that the amounts in those vaccines caused any neuro problems, but because it was an added measure of precaution that was sensible and correct. And I might add that the latest vaccines that contained any thimerosal as a preservative, with the exception of some flu vaccines, were completed in

2001 and outdated in 2003. So anyone watching this program, any parent can be confident that when they take their child to the pediatrician to be immunized this year, they will receive vaccines without thimerosal as a preservative.

MR. RUSSERT: But prior to this year, there may be some concern?

DR. FINEBERG: Prior to 2003, there were some that still had thimerosal, but the concern is not reaching the level of evidence related to the development of autism. The concern is a more general concern about mercury as a potential neurotoxin.

MR. RUSSERT: Mr. Kirby?

MR. KIRBY: Well, if I could get back to the IOM report, that meeting was held 14--or the report was actually issued 14 months ago. This story is moving very, very fast. In those last 14 months, there has been an equally growing body of evidence, again on the biological side, that would suggest that, in a small subset of children with a certain genetic predisposition, they are unable to properly process the mercury that they were exposed to.

And, by the way, the rates of exposure were quite high in the 1990s. At two months of age, children got three shots for a total of 62.5 micrograms of mercury. For their body weight, that's 125 times over the EPA level. For me to reach that level, that would be about 1,125 micrograms.

We know that certain children with autism, again, seem to have higher levels of mercury accumulating in their body. We know that when we give mercury to infant primates, the--there's two types of organic mercury: ethyl mercury in vaccines, methyl mercury in fish. What they found was that the ethyl mercury, once it got into the brain, it converted to inorganic mercury very, very quickly. Inorganic mercury basically gets trapped in the brain, and there's evidence to suggest that, in an infant brain, in the first six months to a year when the brain is still growing, when inorganic mercury gets trapped in that brain, you're going to have this hyper neuro inflammation, or the rapid brain growth that we see in autistic children.

These are the types of things that I think need to be researched further. Yes, we need to look at the epidemiology. There's a whole lot of new biology. This has all been published. None of the biology was published at the time of the IOM hearing. It has since been published, and I actually wonder if the IOM would consider reconvening a new committee or a new hearing to consider the evidence that's come out in the year and a half since the last report.

MR. RUSSERT: Would you?

DR. FINEBERG: Tim, Mr. Kirby's description about the certitude of this evidence, I think, exceeds the actual balance of evidence that is produced when you look at the totality. It's true that mercury is handled differently in the body when it's in the form of so-called ethyl mercury, which is in vaccines, and methyl mercury, which was actually the form which was--on which the standards of exposure were based. That's the type found in fish, as has been mentioned. But when you look back at the studies of actual poisonings of children with large amounts of methyl mercury and ethyl mercury, most toxicologists believe that the ethyl form of the mercury is less toxic than the methyl form--less toxic to the nervous system. And that's based on many experiences with poisoning by these different forms of mercury.

MR. RUSSERT: Many parents have written us over the last couple of days saying that they have put their child in the process of collation, which removes the mercury poisoning from the system, and they say they've seen vast improvement. Wouldn't that suggest that there may be some relationship between the mercury from thimerosal and the removal from the child?

DR. FINEBERG: Tim, autism is a complicated illness, and children with a variety of treatments and non-treatments show improvement over time, which is all to the good. But when you have a single story and a repeated story of an experience that a parent has with a treatment like chelation, you have to keep in mind that the history of medicine is strewn with discarded treatments that people at one time believed in very, very strongly. When you have one case after another, it's one anecdote after another, and the plural of anecdote in scientific terms is not evidence. The only way to know whether a treatment works or does not work compared to other things is to do the clinical trial, comparing those who are given the treatment in a systematic and balanced way with those who are not.

MR. RUSSERT: Mr. Kirby, in your book, you talk about a conference on June 7 to 8 in 2000 in Simpsonwood, Georgia. We've gotten many e-mails and letters about a government conspiracy, that the CDC and the FDA and the Institute of Medicine and everyone has gotten together and really tried to deny information to the parents of children with autism. Do you believe that?

MR. KIRBY: Well, I think the word "conspiracy" and "cover-up," those are very loaded words and I never use them. I do think there has been a lack of transparency and I would think Dr. Fineberg would probably agree with that statement. In this entire process...

MR. RUSSERT: Do you agree with that?

DR. FINEBERG: I don't agree that the lack of transparency had had any bearing on conclusions, and I'm not sure what we mean by a lack of transparency.

MR. RUSSERT: Right now many parents are seeking information from studies from the CDC through the Freedom of Information Act, and they're being told that the HMOs now have that information and they cannot share it because of privacy. And the parents are saying that's outrageous. It could easily be obtained by the CDC and disburse that science, that data so people can look at it and make their own judgments. Should the CDC at least do that?

DR. FINEBERG: In fact, Tim, the Institute of Medicine looked separately in a different study at this system that was in place and did urge the CDC to make these records more available to qualified researchers.

But that is not the same as a lack of transparency in the studies or in the reports. All anyone has to do in the case of the Institute of Medicine report is to read the report. All of the logic is laid out, all of the weighing of considerations. Not everyone may agree with each assessment, but they have all the relevant evidence right before them.

MR. RUSSERT: Mr. Kirby, you have said, "I am totally willing to accept there are other factors at play. It may turn out not to be thimerosal at all." What do you think should be done?

MR. KIRBY: Well, I think, first of all, we need clinical trials for treatments. We need to try to help these children as best we can. There is a clinical trial of chelation therapy under way right now at University of Arizona. Dr. Fineberg said we need these trials. I wish the government was funding them. We need to listen to these parents as well. And I think that they've gotten a lot of dismissal from the scientific community. Parents were telling scientists that their children were born normally and then regressed. A lot of people dismissed that and said that couldn't be the case. We now know from a brand- new study from the University of Washington using videotapes of one-year birthday and two-year birthday that is indeed the case. If the parents were right about regression, maybe they're right about chelation.

Just getting back to transparency for one second if I could and this whole safety data base that we're trying to get access to from the report that Dr. Fineberg cited, it says right here, "The lack of transparency of some of the processes also affects the trust relationship between the NIP, the National Immunization Program, and the general public." The lack of trust and the lack of transparency is what's threatening the vaccine program, not talk about mercury. So the doctor's own committee said that there was a lack of transparency again inside this process of analyzing this data that was presented at that conference in Georgia.

MR. RUSSERT: Many of the National Autism Association and other groups, Doctor, point to Task Order 74.

DR. FINEBERG: Yes.

MR. RUSSERT: This is the arrangement between the CDC and the Institute of Medicine, a one-page memo which helps define the study and why it won't be released. Is there a reason?

DR. FINEBERG: I don't know what exactly that's referring to, Tim, but when the Centers for Disease Control contracts with the Institute of Medicine to undertake a study, they do pay the actual costs of the study.

But keep in mind that the panel of experts that are assembled by the Institute of Medicine receive no compensation whatsoever for their volunteer service. And when a government agency conveys money to the Institute of Medicine, it's not the agency's money. It's the American people's money.

And our obligation is to do the best we can to assess the evidence on behalf of the American public.

MR. RUSSERT: Since thimerosal is now out of the vaccine, latest as of 2003, we will know in a few years whether or not there is a connection...

MR. KIRBY: That's correct.

MR. RUSSERT: ...definitively by the number of cases?

MR. KIRBY: I think so, but again I think we need to look at the biology, but the epidemiology is very important. If the case rates start to drop in the next couple years, I think that will be hugely significant. If I could also just get back to this commission by the CDC of the report, I'd like to do that as well.

MR. RUSSERT: Real fast.

MR. KIRBY: Well, there's evidence that there was pressure put on the committee by the CDC, and we have internal transcripts. I think that's what you were referring to. There are transcripts of private meetings. Some of them were leaked. They're not obtainable through the Freedom of Information Act. Many people are trying to get copies of the other transcripts, and I do hope that the IOM will make those available in the name of transparency in this.

MR. RUSSERT: Was there pressure?

DR. FINEBERG: Absolutely not, Tim. In fact, the whole reason why the Institute of Medicine, the National Academy of Sciences, the National Research Council exists is to be an independent voice outside of government to work on behalf of the needs of the American people. That's what we do.

Agencies do not always hear from us what they want to hear. Sometimes the evidence does not point in a direction that is welcome. Stem cell guidelines or information about climate change or, for example, the ways to fix the Hubble Telescope which came out of the national academies--all of these are studies undertaken on behalf of the American public and the same was true for our assessment of vaccine safety.

MR. RUSSERT: You're absolutely convinced there's no connection between thimerosal and autism?

DR. FINEBERG: I'm convinced that the best evidence all points to the lack of an association. These studies can never prove to the point of absolute certainty an absence of an association. But I would say this, other avenues of research looking at other possible causes today are much more promising ways to spend our precious resources.

MR. RUSSERT: And our viewers should know that there is no thimerosal now in vaccinations, other than flu vaccinations, and so it's safe for your children to do--have that done.

DR. FINEBERG: And even some flu vaccines for children are now available without thimerosal, as well.

MR. RUSSERT: You believe there is a possibility of a connection?

MR. KIRBY: Absolutely. And I think one day we'll find out that there might have been--this has contributed to some of the cases in autism in this country.

MR. RUSSERT: Thank you for a very civil discussion. To be continued.

Missed the show? Watch it online
http://www.autismmedia.org/media11.html

Meet the Press Commentary by David Kirby

My Take on Tim

Don’t tell Ariana, but I like Tim Russert.

Yes, I am extremely biased, on account of Russert inviting me onto his prestigious show and holding up a copy of my book, “Evidence of Harm,” to a bleary eyed, Sunday morning America. And yes, I agree that Russert could go further and hit harder at times in his follow-up questions and cross-examinations of leading political figures. But in my humble opinion, I think he did a terrific job last Sunday on “Meet the Press.” He is to be commended for bringing this serious and urgent debate to the prominence that I, for one, believe is merited.

Last Sunday, “Meet the Press” made history in the annals of autism, journalism, and the American people by bringing together two parties, face-to-face, for the first time to rationally discuss the evidence for and against a link between mercury in vaccines and the explosion of reported autism cases in the United States: And all on national broadcast television (and internationally on MSNBC), no less.

The hundreds of comments I have received on the show are very telling in terms of assessing Tim Russert’s impartiality in covering this story. Some people felt that Russert gave Dr. Harvey Fineberg, President of the Institution of Medicine, extra speaking time out of reverence for his lofty position in science and public health, or perhaps in deference to pharmaceutical advertisers on NBC. But an equal number of people thought that Russert had let Dr. Fineberg give his rather long-winded and circuitous answers without interruption, in order to make it seem like he was flapping and spinning (to borrow a term from the autism world). In other words, the old “give ‘em enough rope” theory.

I don’t ascribe personally to either theory, at least as far as my own experience was concerned. That 20 minutes flies by faster than it takes to reach the end of this sentence. Really. Russert had a lot of questions to ask, and I understand the instinct to move forward against the clock. I was in the same position, wanting to question Dr. Feinberg on many of his statements, but also wanting to move forward to make my own. Incidentally, my four points, boiled to their essence and, I think, unassailable, were: 1) Mercury is toxic and kids got too much of it; 2) We need to look at biology and toxicology (in addition to population studies); 3) This process has lacked transparency; 4) Listen to the parents.”

One more word on Russert’s behalf, before the angry comments start pouring in. This is a hugely complicated and controversial topic, and most people in the mainstream media have been loathe to touch it. To their immense credit, people like Don Imus, Robert Kennedy, Jr., Joe Scarborough, Montel Williams, Ron Reagan and Monica Crowley have also brought this story to national television. It is not an easy topic to cover, but they all recognized it as important.

I notice that the tone of the comments posted on this blog in opposition to this theory (and please folks, look up the meaning of “theory” before you sharpen your knives) have become angrier and more accusatory as time goes on. Shooting the messenger is a great American pastime, and I have no problem with it. But try to listen to the message, too. It actually comes in the form of a question:

“Why is it so controversial to suggest that a known neurotoxin injected directly into the systems of pregnant women, newborns and infant children above federal safety levels MIGHT have caused a neurological disorder in a subset of children with a genetic predisposition against metabolizing mercury efficiently?”

And if mercury is not a contributing factor to some cases of autism, (which could be the case, but I am starting to doubt it), then what is? And where are the laboratory and clinical studies proving that thimerosal is safe, anyway?

David Kirby

PS: Add Doug Flutie and Stephen Stills to the list of famous Americans who now blame thimerosal for their children’s autism. Sadly, there are many more waiting in the wings, so stay tuned. “What do celebrities know about science?” my critics will surely ask. Not much. But here’s a question for you. Why do you think they would risk ridicule and come out so publicly against mercury in vaccines, if they weren’t so convinced it was a source of their precious children’s misery?

PPS: Dan Olmstead of UPI is an intelligent and talented reporter who is unafraid and refreshingly willing to go out in the field to investigate a hunch, rather than the more sedentary methods of some of his inside-the-beltway colleagues. He is a reporter, not a scientist, and he never claimed to be anything else. Our job is to ask questions, and point to possible trends. Maybe the Amish DO have lower rates of autism. Whether the reason is genetic, environmental, or “lifestyle” (electricity, now there’s a good use of taxpayer money as an avenue of investigation) isn’t it reason enough to study this community? Why the vitriol at such a reasonable suggestion?

Thanks for paying attention.

More from Robert F Kennedy Jr.
Huffington Post
Robert Kennedy Jr

Vaccines and Autism: Looking for the Truth? Study the Amish

On Sunday morning's Meet the Press , Dr. Harvey Fineberg, president of the Institute of Medicine, debated New York Times reporter and author David Kirby about the strength of the science linking the current epidemic of neurological disorders among American children to the mercury-based vaccine preservative Thimerosal. The Institute of Medicine as well as the Centers for Disease Control and the Food and Drug Administration base their defense of Thimerosal on four flimsy studies ginned up by the pharmaceutical industry and federal regulators who green-lighted the use of Thimerosal in the first place. Those fraudulent studies deliberately targeted European populations which were exposed to a fraction of the Thimerosal given to American children.

If Dr. Fineberg genuinely wants to test his assertions about Thimerosal safety with epidemiological data, he should commission a study comparing American children who were exposed to vaccines to the Amish, Jehovah's Witnesses, Christian Scientists or others, who, for religious reasons, did not receive Thimerosal-laced vaccines.

A recent survey by United Press found that autism is virtually unknown among Pennsylvania's large Amish populations -- a strong indication that vaccines are indeed a principal culprit of the epidemic. Despite the repeated urgings of independent scientists and the families of autistic children, the federal agencies involved have refused to commission such a study and have closed federal vaccine files in order to derail the creation of those studies by outside scientists.

By Elisa Cramer
Palm Beach Post Editorial Writer

A little bit of knowledge can be dangerous.

Some pediatricians and health officials are silently exhaling that sigh as parents face the reopening of school and the requisite immunizations with renewed questions about whether vaccines cause autism. The release this year of Evidence of Harm by journalist David Kirby and his subsequent appearance on talk shows revived public debate about, as the book's subtitle says, "Mercury in vaccines and the autism epidemic: A medical controversy." A "Power of Truth" rally about the autism-mercury debate drew hundreds to Washington last month. "When I heard some of it," one physician confided, "it was sort of like, 'Here we go again. Hadn't we resolved this already?' "

For parents who inexplicably have an engaging, walking and talking toddler the day before the child gets shots, and a gazing, silent, easily startled, self-abusive one days or weeks after, the answer, obviously, is no. Research has been insufficient for them and for parents, like me, who find their devastating testimonies more frighteningly convincing than the government's staunch dismissal without an alternative explanation.

I started getting the warnings soon after my son was born and, therefore, thrust into the every-time-you-turn-around schedule of government-recommended shots against a dozen preventable diseases. The Royal Palm Beach parents of an autistic son formerly enrolled in my sister's kindergarten class are convinced that immunizations were to blame. They want other parents to be aware of the potential. So my sister has made sure that, next week, when my son goes for the scheduled immunizations for a 24-month-old, I know to ask: Is thimerosal in this vaccine? The preservative contains mercury, a known brain toxin, and once was used routinely in some vaccines to help keep bacteria and fungi from opened containers used for multiple doses.

When I ask the question of my son's pediatrician, I expect to hear what the Centers for Disease Control and Prevention, the American Academy of Pediatrics, the U.S. Food and Drug Administration and the Institute of Medicine all say — and which, generally speaking, I believe: The shots are safe.

"Today, with the exception of some influenza (flu) vaccines," the CDC says, "none of the vaccines used in the U.S. to protect preschool children against 12 infectious diseases contains thimerosal as a preservative. Though some flu vaccines contain thimerosal as a preservative, preservative-free, reduced thimerosal-content influenza vaccines are also available for use in infants." That change is a relief, but it came two years after the pediatrics academy and the Public Health Service appealed to vaccine-makers to remove the preservative. More unsettling is that the change was a whole decade after a 1991 memo written by a physician whom Robert F. Kennedy Jr. described as "one of the fathers of Merck's vaccination programs," who "warned his bosses that 6-month-old children administered the shots on schedule would suffer mercury exposures 87 times the government safety standards."

Writing for Rolling Stone magazine and Salon.com last month, Mr. Kennedy said, "Merck ignored (Dr.) Hilleman's warning, and for eight years, government officials added seven more shots for children containing thimerosal." He also discussed a secret meeting between the CDC, the FDA and pharmaceutical companies in 2000 to review a study that linked thimerosal with increasing numbers of neurological illnesses: "According to transcripts, participants were alarmed about the undeniable links between the thimerosal and widespread brain damage in children.... But the group was most concerned with keeping the findings secret." The CDC, he wrote, "now says it has 'lost' the data that supported the crucial study."

The public benefits from immunizations. And the use of cell phones, pesticides, antibiotics injected into foods and countless other factors may influence our health in ways we haven't begun to understand. But parents know enough to be understandably skeptical. Some vaccines contain mercury, and mercury causes brain poisoning. Thimerosal was used in vaccines for much of the time the autism rate was rising in the past 10 years, from about 1 in 2,500 American children to 1 in 166. Why? What the government won't reveal about its research is causing the greatest harm.

Attention all TACA members! Diane Gallant has worked hard with South Coast Plaza in arranging FREE CAROUSEL RIDES for children with Autism and their siblings!! Come join us for a morning of fun and horse rides at South Coast Plaza!

• Upcoming Dates: The Saturday schedule is:September 24th, October 22nd and November 19th
• Times: 8:30 am-9:30 am (BEFORE the mall opens)
• Local: South Coast Plaza by the carousel ( NOT the Crystal Court carousel!)
• Costs: FREE!!!!!!!!!
• Park: Park by ZTejas Restaurant and the Bank of America ATM’s off Bristol
• Note: Kids can ride as often as they would like and based on availability.

NO NEED TO RSVP! JUST COME AND PLAY!!

Pump it UP in Huntington Beach will be our TACA playground for 2 hours the last Thursday of every month from 6:30pm to 8:30 pm.

Pump It Up has the latest inflatable designs that are engaging, challenging and interactive. Kids love to play on recreational inflatables in our indoor arenas, and they continue to enjoy this fun activity time after time, visit after visit. Kids of all ages love ...Bouncing ...Sliding ... Climbing and ...Tumbling. Indoor inflatables include a custom inflatable bounce house, inflatable slide, inflatable obstacle course, inflatable boxing arena, and an inflatable jousting arena. There are also tricycles and scooter cars etc. on the floor. It’s a great chance to meet other parents and another great play-date opportunity for our kids!

Details: Ages 2+ are welcome, and equipment accommodates even adult sizes should you like to accompany or assist your child on this large equipment. Siblings are welcome. Each jumping child for our group is $6. When you come you will check in to sign a waiver for insurance, and remove shoes before entering arena. We will not be having any music playing at this event (to reduce auditory exposure.) 35 children will be able to attend each event and will be offered on a first-come, first-served pre-sign up basis!

Email Lynn Milucky (not Pump It Up) at funnybunnypaw@yahoo.com or call Lynn’s cell 714-925-3882 to reserve your spot!

Pump It Up is located at the Northwest corner of Gothard St and Heil Ave in the "HB Business Center."  Just 1 mile from the intersection of the 405 Freeway and Beach Blvd. (go around to the back of the business complex, follow Pump It Up signs)

16351 Gothard Street Suite C
Huntington Beach , CA 92647 // 714-847-9663
http://www.pumpitupparty.com/huntingtonbeach.html

UPDATED JUNE 2005: You have read about Ruthie Daniel in the past 6 months worth of TACA newsletters. The bad news has come: HER CANCER IS NOT GONE AFTER SIX VERY HARD MONTHS OF CHEMOTHERAPY.

We need to help this very special, single mother of two boys – one with autism. She has a lot of treatment choices – radiation and others -- to consider. She really needs help.

HOW YOU CAN HELP:

1. GFCF Food for her kids
2. Typical groceries for her family
3. ONE-ON-ONE babysitting for her autistic son after 3pm.
4. Prayers for her

Ruthie’s contact information:
Phone: 949-347-8532
Address: 25574 Via Cresta, Laguna Niguel, CA 92677

FOOD ALLERGIES: NO gluten, casein, yeast, dyes, apples or cottonseed oil.

FOOD Suggestions:

• Nature’s Highlights brown rice pizza crust & organic tomato sauce
• Diesel meat patties
• Shelton ’s Chicken hot dogs
• Pear juice
• Cashew butter & low sugar, natural jams
• Ener-G white rice YEAST FREE loaf
• Potato Stix
• Fruits: pears, white peaches, green grapes
• Yeast free GFCF Pretzels
• Old Fashion Cake & Cookie mix - GFCF
• Blueberry Muffin Mix – GFCF
• Trader Joe’s GFCF Banana Waffles
• Veggies: Carrots, cauliflower, peas
• Trader Joe’s Soy Yogurt
• Trader Joe’s Vegetable Chips (ROUND ONES)
• Trader Joe’s Mini White Round Corn Chips
• Organic Chicken Breasts
• Trader Joe’s Frozen Mangos
• Organic Ketchup
• Pacific Rice Milk
• Trader Joe’s Lime Popsicles
• BOTTLED DISTILLED WATER (SHE GOES THRU A LOT OF WATER DUE TO HER TREATMENT. THERE IS A GREAT NEED FOR THIS.)

Commonly used Sensaria GFCF Products being discontinued:

Sensaria Natural Bodycare - Products to be Discontinued

Many families have been using the sunscreen products with great results but these will be discontinued as of September 1, 2005, along with the Peaceful Moments bath salts. These products will keep for a long period of time if kept in a cool, dark cabinet, (up to two years) so stock up now.

• Sun Worshipper SPF 15 $14.00
• Sun Worshipper SPF 30 $14.00
• Lip Retreat SPF 30 $4.50
• Peaceful Moments $12.00

These are the retail prices. TACA members receive a 20% discount on all products and if you order by August 26 th, through Jamie Davis, receive an extra 10%. You may also designate that this savings can go to TACA instead of you. TACA will then receive products for gift baskets or to give to families in hardship.

Contact Jamie Davis via telephone, email or go directly to order from the website. If you order from the website, please let Jamie know so that the discount will go to TACA.

Jamie Davis, IR 2385 (562) 431-1866 pampered@adelphia.net www.mysensaria.com/jamie

ABC ( ABA Provider) accepting applications for new clients

Autism Behavior Consultants (ABC) is currently accepting applications for new clients in the areas of Orange County, Long Beach and San Gabriel Valley. 

For more information, please contact Christy Crider, Director of Client Services & Administration via email at christy@autismprograms.com or toll free at (877) 927-6300.  

There are so many new web resources, I have decided to make a section for your review. They are all worth looking at!

Web Resource #1:

GREAT GENERATION RESCUE TV COVERAGE THIS PAST WEEK!
Congrats to GENERATION RESCUE & THE HANDLEY FAMILY!
These are great links to send to your family and friends!

• http://generationrescue.org/videos_wmv.php?show=ktvu.05.25.05.wmv
• http://generationrescue.org/videos_wmv.php?show=wflx.05.24.05.wmv

Your children can be helped! Autistic-Spectrum Disorders are a medical condition and should be treated as such. There is no need to rely on false information and dead-end answers claiming children with autistic-spectrum disorders are not treatable. It simply is not true!  

Kurt N. Woeller, D.O. a DAN! (Defeat Autism Now) doctor from Stillpoint Center for Integrative Medicine in Temecula, specializing in biomedical therapies for children with autistic-spectrum disorders, will be sharing important information about cutting-edge testing and therapeutic options to diagnose and treat the many physical conditions affecting children with autism, including: 

• Dietary Intervention
• Nutritional Supplementation
• B12 Therapy
• Heavy Metal and Detoxification Therapies
  ….and More!

Join us for a FREE informative evening followed by questions and answers
Tuesday August 30 th, 2005 from 7:00 – 9:00 pm in Temecula

The Rivard House
40205 Calle Cabernet
Temecula , CA 92591

Seating is Limited – please RSVP to 858-217-2188

Directions:

• I-15 to Temecula
• Head EAST on RANCHO CALIFORNIA ROAD into the Wine Country – approximately 6.0 miles.
• Turn left on CALLE CONTENTO (you will see a sign for LONGSHADOW WINERY).
• Turn RIGHT on VISTA DEL MONTE (if road becomes unpaved you have gone to far!).
• Turn RIGHT onto VINO.
• Turn RIGHT onto CALLE CABERNET - 40205 is at the end CALLE CABERNET.

PARK IN THE GRAVEL PARKING LOT TO THE LEFT OF THE ESTATE

Babysitting will not be provided...no kiddos, please!

The Speech & Language Connection, Inc., is offering a one week social skills camp from August 22nd-26th, from 10:30am - 1:30pm each day.  The camp is designed to teach pre-social skills to preschoolers and kindergarteners with autism as well as typically developing children.  Staffing ratios are 2:1 and staff includes behavioral specialists and speech therapists.  Enrollment required by July 15th.  For more information, or to enroll your child, please contact the office at 714.965.2324.          

Please join us on Wednesday, August 31st from 7:00 - 9:00 on the UCLA campus for the Cure Autism Now Lecture Series.  Dr. Sophia A. Colamarino, Ph.D., the Science Director for the Cure Autism Now Foundation, will present "Researching the Basic Biology of Autism".  Her vision for Cure Autism Now is to see the organization take a leadership role in advancing what is known about the biology of autism by ultimately defining its cause on a cellular and molecular level so that targeted treatments can be designed.

You will also learn more about Cure Autism Now programs, initiatives, and Los Angeles chapter-related activities, as well as how you can be involved with 2006 WALK NOW Los Angeles.  Monies raised from the WALK NOW events directly fund the scientific research needed to increase the pace and progress of autism treatments and a cure.

• DATE:  Wednesday, August 31st, 2005
• TIME: 7PM-9PM
• WHERE:  The Semel Institute for Neuroscience and Human Behavior ("NPI") on the UCLA Campus, 720 Westwood Plaza, Los Angeles, CA, 90095-8353
  PARKING: 
  From Wilshire Blvd. go north on Westwood Blvd.  Please park in Parking Lot #9 (on the right just after Charles E. Young Drive South) and mention Cure Autism Now to the parking attendant.  Parking costs $8.  From the parking lot, proceed to the Auditorium at 720 Westwood Plaza.
• RSVP:  
  Lisa Hill at lhill@cureautismnow.org or (888) 8-AUTISM x38
  Please reference the "Los Angeles Meeting".  There are less than 250 seats available for this event, so please RSVP to reserve yours!
• Volunteer Opportunities: If you would like to help with set up at 6:30 PM, please inform Lisa when you RSVP.

• Date Thursday September 1st
• Time 6:30PM -8:30PM
• For more information visit www.NVIC.org
• To RSVP email to info@convoyvillagechiropractic.com Or Call 888.393.2285
• Location: Mission Resort Inn 875 Hotel Circle South
• FEE $5 at the door

Topics to be Discussed:
1. History of Vaccination and Vaccine Safety Debate
2. Diseases and Mandated Vaccines
3. Individualizing Health Care Decisions
4. Informed Consent and Protecting Your Rights

Some Frequently Asked Questions:
1. Which vaccines do I have to get for my child?
2. Do the benefits of vaccination outweigh the risks for my child?
3. Should I vaccinate a sick child?
4. Does a family history of immune system problems matter?
5. Can vaccines cause autism?
6. Is it OK to give my child many vaccines on the same day?
7. Are there other ways to keep my child well?
8. What should I do to make an informed vaccination decision?
9. Can I get an exemption to vaccination for my child?
10. If I don't vaccinate, what will happen to my child?

2-Day Workshop with Dr. Steven Gutstein – RDI - October 7 - 8, 2005 - 9:00 - 4:00 both days
Town and Country Resort and Convention Center ( San Diego)
CE Credits for Professionals - More details on the workshop can be found at http://www.rdiconnect.com/workshops/SanDiegoCA.

October 2005 Long Beach –OR- Los Angeles conferences. The web conference also includes the Recovered Autistic Children event.  To learn more about the DAN! web conference and to subscribe, visit: www.ARIWebConference.com or www.danconference.com

I have been asked A LOT of questions about Hyperbaric Oxygen Treatment (HBOT) we are doing for Jeff. Does it work? Is there a benefit? How is it going?

I wanted to give a general update on how Jeff is doing a little over ½ thru his HBOT treatment.

BACKGROUND:

We selected to do HBOT with my son Jeff (8 years – ASD, Apraxia & Auditory Processing Disorder)

I did some research and consulted w/ my son’s doc on why, how, what, and other details.

Jeff does not have a seizure disorder so this therapy is relatively safe and can be helpful to kids on the spectrum. Kids with seizures may not be able to participate in HBOT therapy.

The down side to HBOT– it is expensive  (I know, I know – what about autism IS NOT EXPENSIVE??) There are some “autism urban myths” about kids getting hurt in these machines, but I have asked around and have not found a family with a story. Has anyone else?

Instead of acquiring a portable unit that does pressurized, filtered air – we opted for the hospital grade, pure oxygen solution.  The therapy is pretty non-invasive. We wrote a social story about HBOT and Jeff LOVES GOING TO HBOT. We have done 24 of 40 of the 1-hour sessions so far.

The reason why I like HBOT was because it helps many different alignments including stroke. For many kids – specifically my bubba – he seems like he had some issues with brain trauma. (I will let you guess what that was.) Plus, the more I read about HBOT, the more I saw about waking up the parts of the brain that were turned off by the trauma (the parts that were not permanently damaged). A side bonus - pure oxygenation at the cellular level throughout the body – especially the brain – is good for just about everyone.  

Why I did not try this treatment before:   My concern was: “Is this treatment going to be sustaining?” Recent studies are demonstrating that it is. And I was quite skeptical and not too excited to further ding the ol’ credit card again.

THE TREATMENT:

• 1.3 atmospheres (equivalent to being at the bottom of a polo pool in 13 feet of water wearing a scuba mask & oxygen tank.)
• The HBOT unit is hospital grade with pure oxygen run by EMT’s (Emergency Medical Technicians)
• They take the kid down slow and back up slow – the only inconvenience is a bit of ear-popping similar to flying in an airplane, but it is safe. I have tried it and did not feel anything but a little discomfort, and after I popped my ears, I was good.
• The docs recommend 2-80 sessions for ASD. Sessions costs between $100-300 each and prepayment is often required

Note: A portable unit you buy and is filtered/pressured air costs between $13,000 - $22,000. I got nervous about these because: a) I did not want to operate it, b) I wanted pure oxygen, c) I did not have access to docs and EMTs just in case, and d) they have general liability and medical mal-practice insurance (these just make me feel comfortable versus me running a machine in my home).

JEFF’S ISSUES

Jeff’s biggest issues remain: speech and social skills. He is like a 5-6 year old here on his good days. On bad days, I live with a cave man.

HBOT BENEFITS SEEN:

• Jeff is using more words in every sentences (lots more adjectives and descriptors)
• His auditory processing stays stronger throughout the day (he used to peter out by 3 pm and have a very hard time listening)
• Initiating more socially
• What is the most difficult to describe is he loves HBOT (I cannot say that about any other treatment!)  He loves telling me “ MOM, let’s go on my HBOT adventure. I want to feel better.”

It is important to note I really started seeing good things after HBOT session 19 and especially over the last few days. We have also not tried anything new or other biomedical intervention since starting HBOT (besides his Prednisone prescription for that severe lung infection in July.)

Some basic info

But then we are a little over half through the prescribed 40 sessions right now
Maybe more to report later? I hope so.

Hugs, thanks, and be SAFE,
Lisa A Jeff's mom
And Editor: Kim Palmer (thanks Kim!)

Let us know your thoughts

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.

P.S. TACA e-news is now sent to 1,857 people!
(This number represents families – 95%, and the rest are professionals.)