Still Finding Thimerosal in Doctors Offices

Yesterday on Meet The Press, David Kirby, author of Evidence of Harm debated Dr. Harvey Fineberg, head of the Institute of Medicine on the contraversy over the role that thimersoal may play in the development of autism.

One point that was repeatedly stated was that except for the flu shot, all vaccines that have been offered to parents since 2003 have been thimerosal free. This is not the case.

Because parents in the autism community are very concerned about the prospect of their children getting mercury in their vaccines, many of them routinely ask to see the packaging before their child gets a shot. What some parents are finding is that vaccines with the full 25 micrograms of mercury are still being distributed in doctors offices, some with an expiration date of 2007.

My recommendation is this, always ask to see the package insert. If the list of ingredents includes thimerosal, ask for a thimerosal free vaccine.

Following are parent reports of finding these vaccines at the pediatricans office in the last year:

Dear Mr. Russert,
Thank you so much for having both Mr. Kirby and Dr. Fineburg on your show. I think that it was the start of a nice debate. I encourage you to continue this on another show as the amount of time allotted was not sufficient for a full discussion and as you know this is a complicated subject.

I would like to correct a statement that Dr. Fineburg made. He stated that thimerosal had been removed from all vaccines for children with the exception of some flu vaccines. On July 25, 2005, just two weeks ago, I took my 18 month old daughter in for her well check and vaccines. I asked the Dr. about the thimerosal in the shots and he did tell me that the DTP still contained a trace of it. He mentioned to me that he may have some thimerosal free DTP and that he could give hr that one. I told him that of course I wanted the one without thimerosal as I have an autistic son and am terrified that my daughter might become autistic as well. Several minutes went by and he came back in the room to tell me that all they had at that time was the DTP with thimerosal; but that he would be glad to order the thimerosal free shot for me. He also mentioned to me that he just recently found out that there was even a DTP without thimerosal available. This is a very well respected Dr. in my community and he has been a pediatrician for nearly 30 years.

When the doctors office called several days later to tell me that they had the thimerosal free version in stock now and from now on that would be all that they would order. I asked the nurse why this was just now becoming an option. she told me that the state of NC just recently - in the past month or so began paying for the thimerosal free version.

While I do appreciate my Drs. Honesty with me, it is appalling that it was recommended to remove the mercury from shots in 1999 and in 2005, they are still on the shelves.

Sincerely,
Beth Fields

Dear ABC News,

I am the mom of a darling 7 year-old boy with mercury poisoning, also known as autism. While I appreciate the fact that your station has done some reporting on the autism crisis in our country, [snip] you reported that thimerosal was removed from vaccines in 1999. This is NOT true.

There was never a recall on mercury-containing vaccines. Many are still on the shelves at doctor’s offices. Today’s flu vaccines are full of mercury, and they are being pushed on pregnant women and infants. [snip]

Just last month, I had my older son at the doctor’s office for a checkup, and was told that he needed a tetanus booster shot. Since I already have one son with mercury poisoning, I requested a mercury-free version. The doctor assured me that they ONLY use mercury-free vaccines in her practice. However, when I checked the vial that the nurse brought in, it clearly said “Contains thimerosal”. The doctor got flustered and said to the nurse “You brought in the wrong vial. That’s the one we give to the Medicaid kids.” Then she turned to me and explained that the state won’t pay for mercury-free shots. (How’s that for a follow-up story: State-funded mercury poisoning of kids!) We left the office without receiving the tetanus shot, and will never return. [snip]

Sincerely,
Sue Swanson
Alpharetta, GA

Dear Meet the Press,

The vaccine records I have for my daughter show that she was given thimerosal containing vaccines as late as 2004, and not the trace amounts of thimerosal. My daughter received between 39 and 50 micrograms of mercury in one visit. The expiration dates on the vaccines extended into 2006.

She recieved:
• Full amount of thimerosal in the Connaught DTaP she received on 5/13/2003. Expiration date: 7/2004.
• Full amount in the Connaught HIB she received on 5/13/2003. Expiration date: 1/2005.
• Full amount in the Aventis Pasteur ProHibit HIB she received on 6/18/2004. Expiration date: February, 2006.

Vera Smith

Dear Mr. Russert,

As the parent of a child with mercury poisoning and autism, I want to thank you for hosting today's show on the autism-mercury connection. It was a good start to the public debate.

May I offer a few items for your consideration? First, Dr. Fineberg was dead wrong when he stated, and you reiterated at the end of the show, that vaccines have been mercury free as of 2003. On the contrary, you can walk into doctor's offices across the USA today and find full-dose mercury containing vaccines still in use.

I run a large support group and I am still getting many emails and calls from parents who went to their doctor's office and upon asking to see the label on the vial, found full dose vaccines with expiration dates as late as 2007. It is true that vaccines that were thimerosal-free were being made in late 2003, but the thimerosal-containing vaccines are still in use and were never recalled, despite the autism community asking repeatedly for their recall. Please, do not tell the public that vaccines are thimerosal free until you have checked it out for yourself. [snip]

Again, thank you for broaching this topic and I look forward to seeing more about it on your show and others very soon.

Holly Bortfeld
Orrtanna, PA
Mom to Max, almost 10 years old

In May of 2005 my daughter was offered a tetanus shot with the full 25 micrograms of thimerosal at her doctor’s office in Old Saybrook, CT.

Janice Crabtree
Guilford, CT

Beginning at the Beginning

[Updated June 12, 2007]

The following is a summary of the history of thimerosal. It is not a complete list, as there is much more information out there and many more details to the information that I have included, but it hits the high points and gives a good frame of reference for where the discussion of the safety of this product and its relationship to autism and neurodevelopmental disorders should begin.

History of Thimerosal and Autism

Invented in the 1920’s by Eli Lilly, thimerosal is 49.6% ethlymercury by weight, a neurotoxin known to be more than a hundreds times more lethal to tissue than lead.

Eli Lilly’s safety testing of the product consists of a 1930 study of 22 patients dieing from mengiococcal meningitis in an Indiana hospital. Patients are injected with the solutions and followed until their death, which is within days. Because the patients die of meningitis, they are declared to show no adverse reaction to thimerosal and the product is declared safe for use. Thimerosal is subsequently introduced for use in vaccines and in over the counter remedies as a preservative to kill bacteria in the product.

When the FDA is created, Thimerosal is grandfathered in and is not subjected to any additional safety testing. The 1930 study remains the only safety testing done on the substance even after being in use for over 75 years.

Through FOIA requests and documents acquired as a part of discovery process in lawsuits against Lilly, it is clear that they have been warned about, and have been aware of the dangers of the product since at least 1947.

The use of thimerosal in teething powders for infants leads to a fatal out break of Acrodynia, or “Pink’s Disease”, a form of mercury poisoning. This illness has many symptoms in common with Autism. The link to mercury powders was found in the 1940's and by the 1950's Pink's disease was disappearing.

In 1963 Eli Lilly was forwarded an article that read in part: "There is another point of practical significance: does the parenteral injection of thimerosal - containing fluids cause disturbances in thimerosal-sensitive patients?" "It is known that persons that are contact sensitive to a drug may tolerate the same medications internally, but it seems advisable to use a preservative other than thimerosal for injections in thimerosal-sensitive people."

On August 17, 1967 the Medical/Science department requests that the claim "non-toxic" on thimerosal labels be deleted in next printing run. Two weeks later the label is changed to "non-irritating to body tissues," and the phrase non-toxic omitted.

In 1972 The British Medical Journal reports case of skin burns resulting from the chemical interaction of thimerosal and aluminum. "Mercury is known to act as a catalyst and to cause aluminum to oxidize rapidly, with the production of heat." The manufacturers who supply us with thimerosal have been informed." [Thimerosal is being used in vaccines which also contain aluminum].

In the 1970’s six newborns at one hospital die as a result of having a thimerosal containing antiseptic wiped on their wounds.

In 1982 the FDA reviews the use of thimerosal. Their statement reads in part: “At the cellular level, thimerosal has been found to be more toxic for human epithelial cells in vitro than mercuric chloride, mercuric nitrate, and merbromim (mercurichrom). "It was found to be 35.3 times more toxic for embryonic chick heart tissue than for staphylococcus areus." [a pathogen that the thimerosal is intended to kill]. A 1950 study showed that thimerosal was no better than water in protecting mice from potential fatal streptococcal infection." "The Panel concludes that thimerosal is not safe for over the counter topical use because of its potential for cell damage if applied to broken skin and its allergy potential. It is not effective as a topical antimicrobial because its bacteriastatic action can be reversed." Additional language added to some Lilly labels: "As with any drug, if you are pregnant or nursing a baby, seek the advice of a health professional before using this product." The FDA orders the withdrawal of over the counter, thimerosal containing products within a 6 month period. It does not order removal from vaccines, but recommends that the issue be studied and that the incidence of neurological problems in unvaccinated populations like the Amish be compared to the vaccinated population. [22 years later no such study has yet been done. On July 19, 2005 Dr. Julie Gerberding, head of the CDC says that such a study would be difficult to undertake because of genetic confounders. This seems contrary to the scientific process because if indeed such a study is done and it is found that the Amish have a lower incidence of neurodevelopmental disorders, the next step would be to undertake genetic studies to see if their genes differ dramatically from the general population and if their differences can help us locate the genetic component of autism. In addition studies designed to see if the small number of vaccinated Amish differ in their risk for NDDs to the larger Amish population would offer information about increased risk from thimerosal.]

In the 1930’s the average child only received three vaccines in their young life. Many vaccines are added to the schedule over the years, with an increase in the 1980’s and with 3 vaccines added to the schedule in 1991 alone. The current vaccine schedule calls for 31 vaccines in the first 18 months of life, 48 with full flu vaccination by 72 months of life.

A Merck internal memo is obtained during discovery discloses that in 1991 a Merck researcher added up the amount of mercury that is in the new vaccine schedule and sounded an alarm at the company that children who are vaccinated according to it would receive amounts of mercury far and above that considered to be safe by the EPA. Merck takes no action in regard to the information.

During the 1990’s, autism rates begin to rise dramatically. Parents complain to the health authorities that they believe that their children’s developmental disorders are related to their vaccines.

In 1998, a researcher at the CDC does the same math that Merck did 7 years previously. She finds that children are getting as much as 125 times the EPA limit of mercury for their weight. The EPA limit is based on the ingestion of methlymercury in food by a healthy adult. Because 90% of ingested mercury is excreted in the digestive track and never enters the blood stream, so even the EPA limit may be drastically lacking considering that thimerosal is injected directly into the blood stream and is not subject to the bodies natural defenses against toxic poisoning.

In 1999, the CDC and the American Association of Pediatrics issue a joint statement saying that although they find no “evidence of harm” from the mercury exposure that children are getting in their vaccines, they are calling on vaccine manufacturers to remove it from vaccines on a voluntary basis as a precautionary measure because “some children may” get more than the EPA limit for mercury at their 6 month visits. Manufactures begin the process in 1999, but do not remove it from all vaccines.

No legal ban on thimerosal is issued.

No recall of the mercury laden vaccines is issued and companies continue to sell lots already manufactured. Some of these vaccines containing full doses of thimerosal have been found in doctors’ offices, by parents who request to read package inserts, with expiration dates as late as 2007.

No independent or government testing of vaccines is done to confirm that thimerosal has been removed. FDA denies parents request that they set up a system to verify manufacturers claims of low dose or thimerosal free vaccines.

No statement is issued to pediatricians to alert them to the symptoms of mercury poisoning.

No recommendation is made to pediatricians to screen children who suffered the onset neurological impairment after vaccination for mercury toxicity.

Vaccines with 25mcg of thimerosal are still shipped to developing countries Most flu shots still contain a full dose of thimerosal as of this writing in 2007. (The EPA estimates that a person must weigh 550 lbs. to safely tolerate this amount of mercury.)

In November of 1999, the CDC commissions one of its new employees, a Belgian named Thomas Verstraten, to study the Vaccine Safety Datalink to find the risk of autism and other NDDs in relation to thimerosal exposure. Verstraten’s first draft of the study finds a relative risk above 7 for children who receive the highest dose of thimerosal to develop autism. In simple terms, such children have a more than a 600% higher chance of developing autism than children who don’t receive any thimerosal. (A relative risk of 2 is sufficient proof in U.S. courts to find for vaccine injury) Verstraten and other scientists at the CDC spend 4 years trying to change the study so that the relationship between the preservative and NDD’s is significantly reduced or eliminated. The Center for Disease Control will later describe these changes to the study as “improvements”. When the study is published in 2003, it concludes that “no consistent significant associations are found between thimerosal containing vaccines and neurodevelopmental outcomes.” By this time Thomas Verstraten, who is listed as a CDC employee on the study, has been an employee of GlaxoSmithKlein (a defendant in thimerosal law suits) for more than 2 years.

In November of 2000, despite being born almost two months prematurely and despite the assurance of my pediatrician that thimerosal had been removed from vaccines, my son Webster is injected with a DTaP vaccine that was 74.5 times the EPA limit for mercury exposure for his weight, just two weeks past his due date. He will go on to develop verbal apraxia and sensory integration disorder.

In 2001 Bernard et. al. publish their hypothesis: Autism: A Novel Form of Mercury Poisoning. It reads in part: “Exposure to mercury can cause immune, sensory, neurological, motor, and behavioral dysfunctions similar to traits defining or associated with autism, and the similarities extend to neuroanatomy, neurotransmitters, and biochemistry. Thimerosal, a preservative added to many vaccines, has become a major source of mercury in children who, within their first two years, may have received a quantity of mercury that exceeds safety guidelines. A review of medical literature and US government data suggests that: (i) many cases of idiopathic autism are induced by early mercury exposure from thimerosal; (ii) this type of autism represents an unrecognized mercurial syndrome; and (iii) genetic and non-genetic factors establish a predisposition whereby thimerosal’s adverse effects occur only in some children.”

In 2001 the Institute of Medicine is commissioned by the CDC to undertake a comprehensive review of all research into the thimerosal/autism connection. At their first meeting, Dr Stratton, head of the commission, when discussing what the process and product of the working group would be states that, “We said this before you got here, and I think we said this yesterday, the point of no return, the line we will not cross in public policy is to pull the vaccine, change the schedule. We could say it is time to revisit this, but we would never recommend that level. Even recommending research is recommendations for policy. We wouldn’t say compensate, we wouldn’t say pull the vaccine, we wouldn’t say stop the program”. When the transcript of the meeting is made public through a FOIA request, many interpret this to mean that no matter what they find, they will not publicly say that there is any link between the thimerosal and autism. Dr. Harvey Fineberg, head of the IOM, states that this is an incorrect interpretation of the comments, but will not offer any alternate interpretation of what else they could mean.

In 2001 Verstraten presents a version of his study to the IOM. He begins his presentation by telling the panel that as of 8 am that morning, he had become an employee of Glaxo Smith Klein. Despite the conflict of interest and the drastic changes made over the course of the study, the IOM will rely heavily on the study in making their determination. Dr. Verstraten returns to Belgium and except for a letter published in Pediatrics, little is heard from him again.

In March of 2002 my son Chandler, who was born one month early, is injected with Hepatitis B vaccine containing a “trace amount” of thimerosal (currently still on the schedule), despite the fact that he has no risk factors for Hepatitis B, and he is still two weeks from reaching his due date. Within days he develops fevers and uncontrollable crying that lasts for three months and bowel problems that persist for two years until he is placed on the GFCF diet. He will go on to be diagnosed with both Autism and mercury poisoning at age 2. I later discover that the “trace amount” of thimerosal is still just over the EPA limit of mercury for his weight.

In 2003 the Verstraten Study is published in Pediatrics with no mention of the conflict of interest of the lead researcher. Later a private contractor would testify before congress that he was ordered to destroy the original data sets used in the 1999 version of the study that found the dramatic link between thimerosal and autism in the interest of “patient confidentiality”. The entire Vaccine Safety Datalink is eventually moved to an offshore private company and can no longer be accessed by FOIA request.

In February of 2004, the IOM rushes to hold public hearings where researchers on both sides of the issues present their studies. The meeting is considered to be a “draw” between the two sides by many of those in attendance. A link is neither proved nor disproved, but new research in to the mechanism of how mercury can trigger autism and NDDs in a genetically vulnerable sub population is presented, along with case studies of successful treatment of autistic symptoms based on the new research.

In May of the same year, the IOM issues their final conclusion on the link between Thimerosal and NDDs. They state that, “the body of epidemiological evidence favors rejection of a causal relationship between thimerosal-containing vaccines and autism. The committee further finds that potential biological mechanisms for vaccine-induced autism that have been generated to date are theoretical only.” They then go on to take the unusual step of recommending that research into a link between the two be abandoned and funds be spent on other lines of inquiry. The conclusion relies heavily on Verstraten and several other epidemiological studies that are considered to implement fatally flawed methods and to be riddled with conflict of interest by members of the autism community. Parent groups are enraged. The IOM panel disbands.

Later that year, Thomas Verstraten publishes a letter in Pediatrics in response to those who criticize his study and his conflict of interest. His letter does not address the substance of the charges made against the study and the changes that were made to it over it’s 4 year evolution, but instead says that continuing the debate the validity of the 1999 study would be a “waste of scientific energy and not to the benefit of the safety of US children or of all the children world wide that have the privilege of being vaccinated.” He goes on to say that any suggestion of impropriety on the part of himself, the CDC or GSK is an insult and accuses his critics of having “pitiable attitudes”.

In July of 2005, in the face of continuing criticism of the IOM findings, the head of the IOM, Dr. Harvey Fineberg, issues a letter stating that Dr. Stratton’s 2001 comments that they would not say “pull the vaccine” or “change the schedule” were taken out of context and did not suggest that the IOM decision was compromised. Dr. Fineberg has not, despite requests, offered an alternative interpretation of what her comments meant in context.

In March of 2005, Author David Kirby released his book, “Evidence of Harm - Mercury in Vaccines and the Autism Epidemic: A Medical Controversy” detailing the history of thimerosal in vaccines and its relationship to autism.

In April of 2005 the CDC posts a notice on their web site stating that they were in the process of reviewing “Evidence of Harm” and would be responding to the book.

In June of 2005 Robert F. Kennedy Jr. echoed the information found in the book and charged the CDC and Eli Lilly of malfeasance in covering up evidence of a causal effect between thimerosal and autism in an article published in Rolling Stone and Salon.com. It is entitled “Deadly Immunity: Robert F. Kennedy Jr. investigates the government cover-up of a mercury/autism scandal”.

July 19, 2005. The CDC holds a press conference to: “communicate the importance of infants and children receiving their recommended vaccinations on time, and reassure parents that vaccines are safe. The renewed attention to the potential causal link between thimerosal, a vaccine preservative, and autism will also be addressed during the press conference.” Vaccine safety groups are not informed of the press conference nor invited. The conference presents no new information and does not answer important questions raised in Evidence of Harm or Deadly Immunity about the conduct of the CDC the IOM or the reliability of the research that continues to be used to show no link between thimerosal and autism.

As of this writing June 26, 2007 the CDC has yet to issue its response to “Evidence of Harm” or to “Deadly Immunity”.

In June of 2007 the first vaccinated v. unvaccinated study is finally done... by parents. Generation Rescue funded a survey using the CDC's techniques for determining incidence of a disorder and found that vaccinated children are two and a half times more likely to have a neurodevelopmental disorder. CDC spokesman Curtis Allen said, "We look forward to learning more about the survey," . If the CDC responds to the survey this paper will be updated to reflect their response.

On June 25, 2007 Congresswoman Carolyn Maloney (D-NY) introduced the "Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2007" (H.R. 2832), legislation that would require the National Institutes of Health (NIH) to conduct a comprehensive comparative study of vaccinated and unvaccinated populations. Her stated purpose is to resolve the controversy about the possible link between autism and mercury or other vaccine components.

David Kirby Finally Gets His Debate

He has been asking for months to someone, anyone, to take him on. Someone is finally stepping up:

Tune in this week to Meet The Press with Tim Russert, Sunday, August 7, 2005 where David Kirby, author of Evidence of Harm squares off against Dr. Harvey Fineberg, Director of the Institute of Medicine regarding the use of thimerosal, a mercury-based preservative, in children's vaccines and the plausibility of its connection with autism.

Moonlighting at NIH

Outside work approved with 'limited' information

By David Willman
Los Angeles Times
August 5, 2005

WASHINGTON - Ethics officials at the National Institutes of Health often approved senior scientists' requests to moonlight for drug companies and other outside organizations without gathering adequate documentation to help judge whether the arrangements posed conflicts of interest, federal inspectors have found.

In 81 percent of the recent outside arrangements reviewed by the inspector general of the U.S. Department of Health and Human Services, ethics officials were found to have approved the deals on the basis of "limited" information. This and other findings are included in a report by the inspector general that is to be made public today.

"In no instance was the documentation we reviewed adequate for us to make a definitive determination regarding whether an activity was appropriate," the report said. "Inadequate documentation for outside activities can, intentionally or unintentionally, hide potential violations."

The report found that information submitted by the scientists to NIH ethics officials "included insufficient detail regarding the nature of the outside activities, the nature of employees' official job duties, the differences between the outside activities and their official job duties, the outside organizations, and any NIH funding or partnerships with the outside organizations."

The advance descriptions of the outside positions to be entered into by NIH scientists "were too general to demonstrate that employees' official duties would not overlap," the report said.

The inspector general's reviewers "could not determine the appropriateness of eight activities, and they determined that two of the activities appeared to violate regulations."

The report also said, "However, it is quite possible that, due to the approach taken in this review, we have underestimated the number of activities that should not have been approved."

A copy of the 72-page report was obtained yesterday by the Los Angeles Times.

The review is another condemnation of the NIH's recent policies governing outside work by agency scientists. In July 2004, the chief of the Office of Government Ethics concluded that the NIH was beset with a "permissive culture" toward conflicts of interest. The lax policies were largely the result of an agency-wide lifting of controls in late 1995 by the then-director of the NIH, Dr. Harold E. Varmus.

Varmus' successor, Dr. Elias A. Zerhouni, announced sweeping restrictions this past February, citing reports by the Times in 2003 and 2004 that brought to light the payments by pharmaceutical and biotechnology companies of millions of dollars in consulting fees and stock to NIH scientists.

Zerhouni - prodded by the Department of Health and Human Services, the Office of Government Ethics and congressional leaders from both parties - agreed to prohibit NIH employees from accepting any further payments from pharmaceutical or biotechnology companies.

A group of NIH scientists is resisting the tougher ethics rules, which include a provision that would force employees to divest their stock in any biomedical company. They have hired a law and lobbying firm, and have called for Zerhouni to relax the ban on consulting for drug companies and to rescind the stock-divestiture provision, which has yet to be implemented.

Zerhouni has said that he is weighing the criticisms and would consider easing the restrictions if he concluded that they were inhibiting the NIH's ability to retain or recruit qualified scientists.

In a written reply to the inspector general, Zerhouni referred to the "corrective actions" that have been taken recently. He said that, generally, he agreed with the inspector general's findings, conclusions and recommendations.

Rolling Stone Follows Up

Ditto to Jaiden's Dad.

Balance

"So, in this story, I want to say that we should not allow the pressure of finding treatments, providing education and paying for all of this steal our laughter and our joy in our children. They are incredibly special and wondrous kids, created by God with a divine purpose for each of them. Even though the battle is hard and long, and maybe especially because of this, we need to take the time to enjoy our kids just as they are today."

Kelly is a wise woman. We do well to take her advice.

The Mass Mercury Poisoning Incident in Iraq

http://www.project-syndicate.org/commentary/jernelov3

The paragraph relevant to this conversation:

"The crisis did provide doctors with some greater understanding of how to detect methyl mercury poisoning. "Quiet baby syndrome," for example, when mothers praise their babies for never crying, is now considered a warning sign for methyl mercury-induced brain damage in children."

A Call to Doctors to Pay Closer Attention

Doctors and Feds Need To Help Families Struggling With Autism
By Christina Adams

Lately, statements from anti-mercury parents of autistic children have cropped up in media outlets from the New York Times to the Internet. There's a Washington anti-mercury rally on Wednesday. The mercury issue is finally at the boiling point.

People who aren't part of this debate don't understand the passion, indeed the anger, behind it. As the parent of a child diagnosed with autism five years ago, I do. It's the result of institutional neglect, dawning suspicions about toxins like mercury and new understanding of how little has been done to help our children.

For example, at a May gathering of 700 international scientists in Boston, a new study linking autism to children's malfunctioning immune systems was announced. Immunologists at the M.I.N.D. Institute at UC-Davis showed that children with autism have different immune system responses than children without the disorder - evidence of a possible biological activation of autism.

Many parents have long believed that autistic symptoms are sometimes triggered by ill-timed or unclean vaccines, antibiotics, viruses or other subtle assaults. Other conference information indicated that environmental toxins may include chemicals like PCBs (polychlorinated biphenyls) and air pollution, in addition to other brain, genetic and nutritional issues.

This information means autism might be addressed by fixing the underlying immune system abnormalities, according to my son's main pediatrician, California doctor Michael Goldberg, who treats autistic patients. So I waited for a reaction from major health authorities. There was almost none.

When families enter the autism world, few are told how to help their "on the spectrum" child. One parent I know couldn't even get a diagnosis from experts: Finally the photographer at Sears told her that her son was autistic. Parents are rarely told about basic therapies, let alone special diets and medications that can ease symptoms and move children toward recovery. So they trudge along with advice from a few caring doctors, support groups, books and shared recipes - and hope. Truly, our home-spun methods have helped many children get much better.

After my nearly 3-year-old son was diagnosed by his 20-year-old cousin (she worked with autistic kids), neighborhood moms with autistic children were my first sources of medical, legal, scientific and dietary knowledge. Many are light-years ahead of mainstream medical practitioners.

As my husband and I worked to recover our son, I too detected various linkages to autism, sensory and attention-related disorders, based on families' histories, environmental triggers and medical, neurological and dietary issues. Nightly phone calls and e-mails from thousands of distressed families over the years have provided one hell of a medical school.

Still, we desperately need answers. Our trial and error treatments are filled with guesswork. Currently, many parents are trying chelation, a process that strips metals from a child's bones and brain, hoping that removing the mercury and other metals often found in autistic children can help them improve. I haven't approved it for my son, as it can be hazardous, and several studies indicate it does not raise long-term IQ or other skills. But I follow the emerging reports from families with interest, because they provide the therapeutic proving ground.

Autism parents are tackling problems that concern everyone, because vaccine safety and environmental pollutants are related to the long-term health of our species. In January 2004, the American Academy of Pediatrics sent out a special alarm notice that one of every six U.S. children now has a behavioral or developmental disorder, and one of every 166 kids now has a form of autism. And a recent study links greater amounts of environmental mercury to increased autism in Texas. Still, the federal government and medical authorities remain largely silent.

We want the experts to be "fixers" - to tackle the looming problems illuminated by autism-related research so we can spend our time with our kids. My son, now a bright, inquisitive 7-year-old, suggests, "Mom, why don't you make a Web site called 'How I Got My Child Better'? That way people can log on and you won't have to spend so much time on the phone." If the world would really listen to families affected by autism, it could be that simple.

Christina Adams, a former Madison resident, is the author of "A Real Boy: A True Story of Autism, Early Intervention and Recovery" (Berkley Books, 2005).

Web site: www.christinaadamswriter.com.

Autism and Immune Dysfunction

CHILDREN WITH AUTISM HAVE DISTINCTLY DIFFERENT IMMUNE SYSTEM REACTIONS COMPARED TO TYPICAL CHILDREN
Immunologists from UC Davis M.I.N.D. Institute find clear biological component to perplexing childhood neurological disorder
May 5, 2005

(BOSTON, Mass.) – A new study by researchers at the University of California, Davis, M.I.N.D. Institute and the NIEHS Center for Children’s Environmental Health demonstrate that children with autism have different immune system responses than children who do not have the disorder. This is important evidence that autism, currently defined primarily by distinct behaviors, may potentially be defined by distinct biologic changes as well.

The study was released at the 4th International Meeting for Autism Research (IMFAR) – a meeting of autism scientists started by Cure Autism Now, the UC Davis M.I.N.D. Institute and the National Alliance for Autism Research to accelerate knowledge of this increasingly common and perplexing disorder. It is estimated that autism now affects 1 in every 166 children.

“Understanding the biology of autism is crucial to developing better ways to diagnose and treat it,” said Judy Van de Water, associate professor of rheumatology, allergy and clinical immunology at the UC Davis School of Medicine and the UC Davis M.I.N.D. Institute. “While impaired communication and social skills are the hallmarks of the disorder, there has not yet been strong scientific evidence that the immune system is implicated as well. We now need to design carefully controlled studies that tell us even more about the way in which a dysfunctional immune system may or may not play a role in the disorder itself.”

Van de Water, along with co-investigator of the study Paul Ashwood, assistant professor of medical microbiology and immunology at the UC Davis M.I.N.D. Institute, isolated immune cells from blood samples taken from 30 children with autism and 26 typically developing children aged between two and five years of age. The cells from both groups were then exposed to bacterial and viral agents that usually provoke T-cells, B cells and macrophages – primary players in the immune system.

Of the agents tested in the study - tetanus toxoid, lippopolysaccharide derived from E. coli cell walls, a plant lectin known as PHA, and a preparation of the measles, mumps and rubella vaccine antigens - the researchers found clear differences in cellular responses between patients and controls following exposure to the bacterial agents and PHA.

In response to bacteria, the researchers saw lower levels of protein molecules called cytokines in the group with autism. Cytokines function as mediators of the immune response, carrying messages between B, T and other immune cells. They also are known to be capable of having profound effects on the central nervous system, including sleep and the fever response. Immune system responses to PHA, in contrast, produced more varied cytokine levels: Higher levels of certain cytokines and lower levels of others.

According to Van de Water and Ashwood, these studies illustrate that under similar circumstances, the cytokine responses elicited by the T-cells, B-cells, and macrophage cell populations following their activation differs markedly in children with autism compared to age-matched children in the general population. Cytokines are known to affect mood and behavior, and while their specific role in the development of autism remains unclear, the potential connection is an intriguing area of research that warrants further investigation.

"This study is part of a larger effort to learn how changes in immune system response may make some children more susceptible to the harmful effects of environmental agents," said Kenneth Olden, director of the National Institute of Environmental Health Sciences, the federal agency that provided funding for the study. "A better understanding of the connection between altered immune response and autism may lead to significant advances in the early detection, prevention and treatment of this complex neurological disorder."

"We would like to take these findings and explore whether, for example, the cytokine differences are specific to certain subsets of patients with autism, such as those with early onset, or those who exhibit signs of autism later during development," Ashwood said. He added that the logical next step is to look directly at specific cell populations that may be responsible for the diverging responses between patients and controls.

This study was supported by grants from the National Institutes of Environmental Health Sciences, the U.S. Environmental Protection Agency, the UC Davis M.I.N.D. Institute, Ted Lindsay Foundation and Visceral. The UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute is a unique collaborative center for research into the causes and treatments of autism, bringing together parents, scientists, clinicians and educators. For further information, go to http://www.ucdmc.ucdavis.edu/mindinstitute.

More in the Investigation Into Inflammatory Bowel Disease and Autism

New Study Shows ‘Compelling Evidence’ of Major Intestinal Immune Disease In Children With Autism
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 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.”

No... Seriously. What Epidemic?

Autism from a Teacher's Perspective
Haven De Lay
Sat Jul 16, 2005

The first year I taught was in a school for handicapped children and adults. That was in 1980. In the WHOLE school, there was only one older man with autism.

I went on to teach for fifteen years in public school, mostly inner-city. Special ed children were main-streamed. Those who needed them had aides who came to class. I do not recall any autistic children. We had several, in my opinion who had ADD and ADHD. These were the years from 1982-1997. I taught high school. What I recall is wondering why so many kids couldn't seem to pay attention like we did when we went to school. They had trouble sitting still, and each year there were more kids with behavioral issues. In 1984 I had maybe five kids out of 165 who could not behave or were constantly defiant, but by 1997, I had 40 out of 165 who had serious behavior problems.

Now, in my son's school, which is out in the country, there are many children who are autistic, and sad to say, none of the other parents in my son's class are doing anything to help their children. I think they see me as "way out there."

It's interesting to note, that when my son was first tested there, he was severely "autistic." He had no speech, socialization, etc... He was way below these other kids his age who were diagnosed "autistic." Now, he has far surpassed them. Teachers who were skeptical of what I was doing say, "It's a miracle." And they tell me they wish the other parents would try doing what I have done.

We still have a way to go, but Ethan will be half day in life skills in the fall and a half day in regular kindergarten! He is sitting next to me now, spelling colors. Wow! And the mainstream doctors told me he would NEVER talk!

What Epidemic?

The Age of Autism: What epidemic?
By Dan Olmsted
Aug 1, 2005, 20:28 GMT


WASHINGTON, DC, United States (UPI) -- One of the core questions about autism is whether it actually has increased at startling rates or if it is just better recognized than it used to be.

Officials at the Centers for Disease Control and Prevention in Atlanta say they do not know the answer to that question but are trying to find out. Some medical experts say they think there really has been no upsurge in cases, just more public awareness and broader diagnostic criteria.

Don`t tell that to many parents of autistic children -- parents such as Kendra Pettengill of Roseburg, Ore. She got in touch with UPI`s Age of Autism to explain why she finds that argument not only ridiculous, but downright revolting. Because of the clarity and power of her comments, we decided to run them at length.

In future columns we will print observations by those who think there is no autism upsurge. If you agree, please get in touch.

Here are excerpts from Kendra Pettengill`s comments:

If I hear one more reporter repeating the mantra that part of the autism increase is better diagnostics, I will simply go mad. Anyone who has seen even one child with autism knows that not one of these kids would ever go undiagnosed.

We would have to believe that 10 or 20 years ago a parent would not have demanded to know why their child had regressed after being normal. Would not have demanded to know why they suddenly couldn`t relate to the outside world. Would not have demanded to know why they persistently rocked, flapped their hands, walked on their toes, bit themselves, pulled out their own hair and banged their heads to the point of serious damage. Would not have asked why their child had hundreds of meltdowns every day and could not stand a change in routine.

Would not have questioned why their child would not make eye contact, or screamed if they were touched or held. Would not have questioned why certain textures, foods, sounds, colors sent their children into a wild tailspin for no apparent reason. Would not have questioned why their child only ate three foods, but would chew on wood, sand, or fabrics. Would not question why their child could not speak at 2 years old, or why he could speak and then suddenly stopped abruptly never to speak again.

Parents, it would have to be believed, would not have questioned the litany of medical issues that their child with autism also faces. You would have to believe that schools and teachers also somehow missed all of this and these children managed school and just slipped through the cracks. To believe this you have never seen even a mildly autistic child.

No child with autism ever went undiagnosed.

I have been dealing with this for four years and I am still appalled that this has not been declared a national emergency. What if you announced tonight that 1 in every 150 children were being abducted from their beds every night? Parents would be screaming for the government, the police, somebody to do something. Well that is what is happening, except they are only taking our children`s brains and leaving the body behind.

Many scientists, doctors, teachers and parents know that the increase is real and it is most likely due to an environmental assault such as vaccines. Denial using the "changed diagnostics" line serves no one. It leaves parents like me on the fringe of society, dealing with a devastating disease with no assistance. It abandons a generation of children that could be helped in many ways to become contributing members of society.

I beg anyone who believes it is better diagnostics to find all the 20-, 30-, 40-something people who have autism and were somehow missed in the process of life. They must be out there somewhere -- they went through 12 years of school, possibly college; married; got jobs, and were somehow missed as autistic.

Here is a hint. If they did all those things without being noticed by anyone, they are not autistic. This epidemic now is made up of kids who cannot do any of those things. They have no friends. For the most part they cannot even function in a typical classroom, let alone be missed in one. They can`t comprehend classroom directions; hence even in a typical classroom they need an aide to ensure they gather the proper information and make it through their day.

Every teacher or school person I speak to says with utter fear in their eyes, "Something is very wrong with our children." We are being inundated with autism, ADD, ADHD, speech delays, tics, Tourette`s syndrome, asthma, insulin-dependent diabetes.

I look back on my entire life, and I cannot come up with one single person I knew in grade school, junior high, high school, college, the Air Force or workplaces who exhibited what even I would easily recognize as even mild symptoms of autism, let alone a full-blown case.

There was a blind guy in my school who also rocked a lot, but so does Stevie Wonder. He also had no other symptoms of autism and even wrestled on the varsity team. You would think if it has always been this prevalent that I could recall at least one, if not many, people who would be questionable.

No, none. But then again, I didn`t know anyone with asthma growing up, no children with ADD, ADHD, no kids or classmates with bipolar disorder or Tourette`s either. Come to think of it, I never knew anyone on anti-psychotic medications, nor do I remember prescription cubbies in the classrooms like they have now to monitor and dispense all the inhalers, Ritalin, Risperdal and the like.

The teachers and educators and parents are right. What is wrong with our children that 1 in 6 has a developmental disorder, including speech delays, tics and autism on the severe end of that?

Those claiming better diagnosis instead of a real autism epidemic need to get out of their research clinics, get their noses out of their papers full of numbers that apply to no one in America, get out of their ivory towers, get out of their government offices and look in every small clinic, classroom and parent support group across America.

They will instantly know that not only is there an epidemic, it is actually 100 times worse than the worst-case scenario they could dream up in their worst nightmare. The denial of the numbers does not make them go away and cannot reduce them.

No child with autism has ever gone undiagnosed in any setting, in any decade, in any loving home, caring community or concerned school or classroom. Only in their unrealistic dream worlds can these "experts" continue to deny the millions of afflicted that continue to grow at record pace.

It is time this is stopped. Autism is an epidemic and a national crisis.

E-mail: dolmsted@upi.com

A Reason to Believe Parents?

Home Videos Show Autism Starts Later in Some
Birthday Party Videos Show Symptoms of Autism Emerge at Different Times
By Jennifer Warner
WebMD Medical News

Aug. 1, 2005 -- Home videos of children's birthday parties may validate what many parents of autistic children have suspected in retrospect: Children who seemed normal in their first year of life may regress and develop symptoms of autism by their second birthday...

..."Once again, this study provides an important lesson that parents are good reporters on what is happening with their children," says researcher Geraldine Dawson, PhD, director of the University of Washington's Autism Center...

How sad is it that they had to do a study to help to convince doctors that they should believe what parents are telling them about their own children.