• Meets: 2nd Saturday of each month
• More Info: (info in item #1 for meeting topics and details) CLICK HERE TO FIND A MEETING

Parents of some autistic kids are at odds with many experts over the
efficacy of nontraditional treatments.

By JENIFER B. MCKIM
THE ORANGE COUNTY REGISTER

  
BELIEVERS: Joseph Farrell's parents say the boy never would have improved from autism the way he has without costly, extensive treatment like an oxygen chamber, a strict diet and a $500-a-month regimen of medicines.

Joseph is lying in a hyperbaric oxygen chamber, breathing from a mask and playing Nintendo.

The therapy is meant to clear the fourth-grader's head and repair nerve damage linked to a 7-year-old autism diagnosis.

It's routine for him - breathing pure oxygen on the second-floor landing of his parents' home. But it puts the lean, good-natured boy directly in the vortex of a contentious debate about what causes autism and how it can be treated.

Joseph Farrell, 10, joins what some parents and doctors say is a growing group of children who have "recovered" from autism, partly because of alternative treatments largely dismissed by mainstream doctors.

Parents in Orange County and nationwide are turning to treatments such as oxygen therapy, chelation and a wheat- and dairy-free diet to treat autism, many under the supervision of doctors trained by the Autism Research Institute in San Diego.

Although there is no national data, a 2004 report in the Journal of Developmental and Behavioral Pediatrics showed one in three recently diagnosed Philadelphia children use such treatments.

Many doctors and researchers are concerned that parents are spending considerable money and emotion on treatments that don't help or could cause harm. Last summer, a Pennsylvania boy died while being injected with a chelation drug meant to eliminate toxic metals from his body.

"There is no scientific valid evidence that any of these treatments alter the natural course of the disease,'' said Edward Ritvo, UCLA professor emeritus and author of "Understanding the Nature of Autism and Asperger's Disorder: Forty Years Along the Research Trail."

"I'm very glad (Joseph) got better, but he got better because it was the genetic program and God's will, not because of what was done to him," he said.

Answers are important for the parents of the nearly one in 166 children reported to have an autism spectrum disorder, including autism, Asperger syndrome and pervasive development disorders.

In California, the number of autism diagnoses has risen to 28,000 from 6,000 over the past 10 years, according to the state Department of Developmental Services.

An autism diagnosis can be devastating. Symptoms, ranging from mild to severe, include communication problems and obsessive or ritualistic behaviors.

Inflaming the debate is the belief among some parents that mercury in vaccines poisoned their children, a thesis rejected by the Centers for Disease Control and Prevention and the Institute of Medicine. Doctors worry that some parents shun vaccines altogether, putting children at risk for polio, measles and whooping cough.

Joseph's parents, Joe and Selina Farrell, say their oldest son never would have improved the way he has without costly, extensive treatment like the $21,000 hyperbaric chamber. Joseph also follows a strict diet and a $500-a-month regimen of pills, including fish oils, vitamins, minerals and a detoxifier.

He recently was weaned off the oral chelators. Chelation usually involves taking a chemical – by pill, injection or lotion – that binds with heavy metals in the body and comes out in the urine.

"We can't wait for science to catch up," said Selina Farrell, member of a Newport Beach-based parent group, Talk About Curing Autism. "I want people to know that there is a child who did these things and really did recover."

Researchers are launching studies, some federally funded, to scrutinize what parents say.

"When you consider anecdotal evidence, they sure present a strong story for some of the treatments," said Robert Hendren, executive director of the UC Davis M.I.N.D. Institute. "I think it is worth considering rather than dismissing too quickly."

Joseph was born healthy at 5 pounds, 14 ounces. He developed normally, his parents said, until he was about 10 months old, when he began to flap his hands, a common behavior with autistic children.

He started talking and interacted well, but then his language regressed. He had tantrums. He'd lie on the floor, pace or jump.

His parents, both lawyers, felt Joseph was being stolen from his body. But several pediatricians said not to worry.

When he was 3, Joseph went to preschool. Other children were talking in sentences. Joseph was still pointing, saying only words like "desk" and "computer." He sat and spun wheels on trains. "I felt my blood go cold," Selina Farrell said.

After a neighbor mentioned autism, Farrell discovered the Autism Research Institute on the Internet. It was founded by Bernard Rimland, who wrote a 1964 book challenging a long-held belief that autism was an emotional disorder caused by poor mothering.

Rimland recommended a diagnostic survey for Joseph. They knew immediately. "It was a total relief to finally have a name for the disorder," Farrell said. "I knew the enemy."

The Farrells started Joseph on Applied Behavior Analysis, a now widely accepted therapy including intensive behavioral and educational training. They joined Talk About Curing Autism, a 1,400-member parent group that supports biomedical treatments.

The Farrells also went to a conference held by Defeat Autism Now, a project of the Autism Research Institute. The institute holds meetings around the country, often leading children onstage who they say have lost their autism diagnosis.

At the conference, the Farrells heard the still-debated theory that autistic symptoms can be caused by intestinal and immune-system problems that prompt toxins to affect the brain. They believe Joseph was poisoned by toxins injected in the 16 vaccines and the antibiotics that he was given before the age of 2.

Proof, they say, lies in the boom in autism diagnoses in the past two decades, which came in tandem with an increase in vaccinations recommended for children.

They started Joseph on a wheat- and dairy-free diet. After some months, they said, Joseph began to think more clearly and had less self-stimulating behavior seen in autistic children.

They also determined that Joseph had yeast infections that were affecting his behavior and decided to try an anti-fungal medicine. They saw great improvement, but unsure if it was because of the medicine, they stopped using it. He began to pace and flap his hands again.

When Joseph was 5, they consulted a doctor now based in Texas who supports biomedical treatments.

"The only reason they know about me is because parents say my kids are doing better if you do this and this and this," said Dr. Jerry Kartzinel, who comes to California once or twice a year to treat about 200 children. Traditional doctors "refuse to look at the evidence," he said.

Kartzinel prescribed an oral chelating agent for Joseph. The Farrells could see a difference in his thinking and evidence of metals in his urine samples. Most recently, they began to put him in a hyperbaric oxygen chamber, one of the newer treatments for autistic children.

Selina Farrell believes the behavioral therapy was instrumental in Joseph's recovery but the biomedical treatments pushed him into the mainstream. Although Joseph needed a full-time aide in preschool and half of kindergarten, he now goes it alone. He excels in accelerated classes, but still struggles socially.

The center that oversaw his treatment said in 2002 that he no longer qualified for services.

"The diagnosis of autism requires very specific symptoms, and clearly Joseph doesn't have them any more," said Doreen Granpeesheh, executive director of the Tarzana-based Center for Autism and Related Disorders.

Some staff at Joseph's school are skeptical.

"He's made a lot of progress, but I'm hesitant to say he doesn't have autism," said Lynelle Laubach, the school's speech and language pathologist. "I don't think it is something that goes away."

Advocates of biomedical treatments say they don't claim all children can be cured of autism - simply that treatments can help.

The Autism Research Institute says treatments have helped thousands of children recover.

"We are not saying the kids are perfect. We say they are perfectly capable of getting along," Rimland said. "We are saying they are no longer considered autistic."

Joseph's pediatrician, Dr. Bob Sears of Dana Point, was skeptical when the Farrells asked him to prescribe an anti-fungal medicine to treat autistic symptoms. But he saw a difference in Joseph and decided to learn more. Now he has 200 patients he has treated biomedically.

"The number of times we see amazing results is often enough to keep me really excited about it," Sears said.

Skeptics say autistic children can naturally improve over time. They talk about the placebo effect. They point to Secretin, a gastrointestinal hormone therapy that spread in popularity after news that it helped several autistic children. Scientific studies did not support the theory.

The American Academy of Pediatrics in 2001 issued a statement dismissing most alternative treatments, including chelation and special diets. However, it directs doctors to stay supportive and involved with parents interested in such endeavors.

"I rarely say 'don't do this,'" said Susan Hyman, an associate professor of pediatrics at the University of Rochester in New York and a member of the academy's advisory task force on autism. "Parents are in a desperate situation . They need to be aware they are taking a risk."

Joseph is more interested in Yu-Gi-Oh cards and hanging out with his best friend, Alex, than in worrying about risks. He understands that he is taking measures designed to help him think.

"It's because I used to have autism. I'm not exactly cured, it's 99 percent," he said.

Joseph doesn't mind the diet. He hopes someday to be completely cured. "I really want to eat maybe like a full made cheeseburger and a pizza."


Editors note: Special thanks to Jennifer McKim for writing this story and a great big thanks to the Farrell family for speaking out – both actions take courage and are to be commended.

The comments from the quoted professor made me more than sad. Had this professor worked with Joseph? Did he know him before, during and after intervention to make this comment? I don’t know who is more “desperate” -- the parents looking for answers from experts or these “experts” holding on to the myths of the past and writing off a generation of kids.

All I can think about in this situation is the quote off the TACA web site:
“When doctors repeatedly tell you there is nothing you can do, it is going to take a lot of families to prove they’re wrong.” Comments like these drive parents to find their own answers. I guess it is going to take some more children losing their autism diagnosis – so lets get busy!

National Autism Association Says Senate Gift to Drug
Companies Is Unconstitutional
Liability protection allows injuries from pharmaceutical products without penalty to manufacturers as Senate Majority Leader heralds “Fristmas”

Washington, DC – After procedural maneuverings last week to lessen concerns over back-room deals that became unrelated additions to the Defense appropriations bill, the Senate allowed the bill to pass, leaving intact a provision granting immunity to drug companies from liability for injuries caused by their products. Children’s advocacy and consumer watchdog organizations are calling this provision an affront to democracy and civil rights.

The plan to grant sweeping liability protection to drug makers has been years in the making, spearheaded by Senate Majority Leader Bill Frist. Previous attempts include the notorious 2002 “Eli Lilly rider” covertly slipped into the Homeland Security Act under the cover of darkness.

“Such drastic changes to public health and our judicial system should have been open for public debate, not slipped in surreptitiously to unrelated, must-pass legislation. These behind-the-scenes tactics were necessary because of the unconstitutional provision to rob injured citizens of their rights,” said Wendy Fournier, National Autism Association (NAA) president.

The implications of liability protection for drug companies to families of vaccine-injured children and first responders who suffer future injuries are gaining increasing public attention. After Congress established the National Vaccine Injury Compensation Program in 1986, manufacturers had less incentive to ensure the safety of vaccines. In 1991, when warned that the mercury used as a preservative in many childhood vaccines exceeded safety guidelines, industry ignored the information, allowing an entire generation of children to be overexposed to one of the most dangerous toxins known to man.

According to NAA board chair Laura Bono, “Families of vaccine-injured children have witnessed the emotional, physical, and financial devastation caused by the pharmaceutical industry’s reckless disregard for safety standards. Now, the misplaced priorities of Senate leadership have sacrificed public health and basic civil rights to the greed of an industry willing to overlook safety concerns for the sake of profit.”

If enacted, such legislation will allow for no acceptable legal remedy for those injured by vaccines, including first responders required to receive vaccines when mandated by government.

In comments following last week’s vote, Senator Frist referred to the upcoming holiday season as “Fristmas”. Ms. Bono observed, “Evidently, ‘Fristmas’ means the pharmaceutical industry gets a four billion dollar gift and complete liability protection for their products from our politicians. No other industry has enjoyed the marriage between government and private business to the extent of today’s pharmaceutical companies. I am afraid for American citizens who could be one shot away from a lifelong disability far worse than the disease it was meant to prevent and be left with no legal recourse for pursuing compensation for their injuries. We should all be very concerned about the future of public health and civil rights now that the rules have changed so drastically.”

For more information, go to www.nationalautism.org

Protection for makers of vaccine may backfire

BY BRUCE TAYLOR SEEMAN
NEWHOUSE NEWS SERVICE

WASHINGTON -- A law shielding bird-flu vaccine manufacturers from consumer lawsuits could cause many Americans to refuse vaccination for fear they would have no recourse if it harmed them, some health experts say.

The legislation, which cleared Congress last week, could significantly undermine efforts to ensure widespread protection against a potential avian-flu pandemic, they warn.

Erin McKeon, associate director of governmental affairs for the American Nurses Association, said liability exemptions were partly to blame when other vaccination programs stumbled.

"Look at how the smallpox vaccination program went in 2003, when the president tried to vaccinate half a million health care workers, but really ended up with less than 40,000 because there was no compensation program," McKeon said.

The liability exemption was attached to the defense spending bill. The legislation contains about $3.8 billion to fund strategies for preparing the nation to fight a bird flu pandemic.

Supporters of the liability exemption insist it is necessary to encourage more companies to make vaccine. Vaccine manufacturing is financially risky, drug makers say, partly because the demand for vaccination is transitory. Also, vaccines generally are administered to healthy people who, if they get sick, might blame the vaccine and sue.

Len Lavenda, a spokesman for vaccine maker Sanofi Pasteur of Swiftwater, Pa., said the liability exemption is needed because manufacturers can't secure liability insurance for bird-flu vaccines. Insurers regard such products as uncharted territory, he said.

Without insurance, "We'd be asked to put the company's entire economic future on the line to produce the vaccine, and we're not willing to do that," Lavenda said.

But the Association of Trial Lawyers of America notes that Sanofi Pasteur has signed $100 million in federal contracts to develop bird-flu vaccine even though the liability shield does not yet exist. The association said federal health agencies have concluded liability concerns have little or no effect on vaccine production.

Blocking consumers' rights to take vaccine makers to court would remove an incentive for companies to make safe drugs, the lawyers group said.

Bruce Taylor Seeman may be reached at bruce.seeman@newhouse.com.

Congress gift-wraps giant present for pharmaceutical companies

Kathy Hubbell, "Congress gift-wraps giant present for pharmaceutical companies", Health Sentinel,

This past week - Congress passed the Department of Defense appropriations bill. The bill, which is now law, contains language protecting vaccine manufacturers from any liability whatsoever, even in the event their drugs cause illness or death. The charge to pass this legislation was lead by Senator Bill Frist.

According to LA Weekly, Frist’s pandering to the lobbyists of the voracious health-care industry knows no bounds. “Frist isn’t the senator from Tennessee — he’s the senator from the state of Health Care Industry Influence — he’s gotten more than $2 million from the health-care sector, giving him the dubious distinction of raising more cash from health-care interests than 98 percent of his colleagues,” says Nick Nyhart, executive director of Public Campaign.

The bill states in the section titled “Public Readiness and Emergency Preparedness Act” that, “A covered person [The United States or countermeasure manufacturer or distributor] shall be immune from suit and liability under Federal and State law with respect to all claims for loss caused by, arising out of, or resulting from the administration to or the use by an individual of covered countermeasure”

Anyone who suffers any “loss” will not legally be able to sue anyone for that loss. A loss is defined in the bill as “death”, “physical, mental, or emotional injury, illness, disability, or condition”, “fear of physical, mental, or emotional injury, illness, disability, or condition, including any need for medical monitoring”, and “loss of or damage to property, including business interruption loss.”

According to the American Trial Lawyers Association, “the proposal provides that any ‘drug, biological product or device that is used to mitigate, prevent, treat, or cure a pandemic or epidemic or limit the harm such pandemic or epidemic might otherwise cause’ may be covered and given immunity. The proposal does not, in any way, limit its application only to new drugs or vaccines used in a pandemic context. The scope of the proposal is so broad that it could include drugs like Tylenol, Advil and would have applied to Vioxx.”

The law immunizes drug companies for reckless misconduct and grossly negligent conduct. The only exception to the grant of wholesale immunity is in the case of “willful misconduct.” However, willful misconduct is defined as evidence that the drug company had actual knowledge that their product would injure or kill someone. This requirement means that only conduct that would also constitute assault, battery, or murder would be sufficient to find “willful misconduct.” The language explicitly protects recklessness by stating, “a standard for liability that is more stringent that a standard of negligence in any form or recklessness.” That is language never before seen in any proposed bill.

The authority to declare the use of countermeasures rests with the Secretary of Homeland Security. The bill states, “if the Secretary makes a determination that a disease or other health condition or other threat to health constitutes a public health emergency, or that there is a credible risk that the disease, condition, or threat may in the future constitute such and emergency the Secretary may make a declaration, through publication in the Federal Register, recommending, under conditions as the Secretary may specify, the manufacture, testing, development, administration, or use of one or more covered countermeasures.”

The law gives the Secretary supreme power with no court having the ability to question the mandate of the Secretary. “No court of the United States, or of any State, shall have subject matter jurisdiction to review, whether by mandamus [A writ by which a court commands the performance of a particular act] or otherwise, any action by the Secretary under this subsection.”

According to the American Trial Lawyers Association, “there will always be a future risk of a health condition becoming an emergency, but that future risk alone should not be enough to justify total immunity for the pharmaceutical industry. This declaration is not subject to appeal, or to any independent judicial review.”

This is a merry Christmas for the pharmaceutical companies and a disaster for the American public.

Kathy Hubbell
Manager, Military Vaccine Action
Committee, L.L.C.
www.mvacpac.org
email: contact@mvacpac.org

'Merry Fristmas' - Drug companies protected from liability

Vaccines save lives. And for the most part, they're safe. But with new vaccines coming onto the market and billions of tax dollars going toward vaccine purchase, Americans need assurance that the preventive treatments do more good than harm.

That's why Congress should reject a plan to shield vaccine manufacturers from liability for their products. These companies already receive considerable public subsidies for their products, both through research grants and public-agency purchases of vaccine for distribution. Holding them accountable makes sense -- but not to House leaders or Senate Majority Leader Bill Frist.

Frist worked last week to insert a proposal into a must-pass defense bill that would create near-total immunity for vaccine makers, even when their products harm someone. Frist's language cleared the Senate early Thursday -- some senators tagged it a "Merry Fristmas" for drug companies -- after the House passed it Monday.

This isn't the first time Congress has considered vaccine-related immunity, but it is the first time it considered leaving consumers with little recourse, even for legitimate injuries.

In 1976, Congress granted immunity to manufacturers of swine-flu vaccine -- but set up a fund to compensate people who suffered adverse health effects. The same happened in 1986, with a fund for people injured by childhood vaccines, and in 2003, with the creation of a fund for people taking the smallpox vaccine. The health fallout from those inoculations was significant: Many reported cardiac and neurological problems.

Frist's proposal does nothing for victims, and it bars them from suing unless they can prove manufacturers guilty of "willful misconduct" in vaccine production. The argument for such a draconian provision is threefold: It makes vaccine production more economically feasible for drug companies, it encourages the development of new vaccines and it allows the government to respond quickly in pandemic situations.

All three arguments are easily dismissed. With governmental agencies and private outlets (such as Wal-Mart, which buys millions of doses of flu vaccine each year) eager to buy vaccine, there's no need to protect drug makers' bottom lines. Vaccine development proceeds apace: Sanofi Pasteur is seeking approval of a new vaccine that could prevent up to 70 percent of cervical cancers. A Harvard University study published in the Journal of the American Medical Association shows that vaccine manufacturers are already increasing production -- without the liability reforms.

Finally, federal health officials already have the authority to insert immunity provisions into contracts meant to stave off an epidemic. Most recently, liability protection was granted to companies making vaccines against the avian flu.

Frist's immunity provisions might actually work against the public health. Many Americans already regard vaccines with a dubious eye, wondering if it might not be safer to go without. This provision could drive patients away from even the safest vaccines, increasing the vulnerability to potentially deadly and communicable diseases.

Civil liability remains one of the most important consumer protections in this country. Frist shouldn't use fear of an epidemic to strip Americans of their legal protection.

Editor notes: Again, we are experiencing flashbacks of the Homeland Security bill rider of 2002. Although there are some differences, we should be very aware of the content of these legislative moves, how this affects our children and next steps.

Environmental Mercury Release, Special Education Rates, And Autism
Disorder: An Ecological Study of Texas.

http://tinyurl.com/7wld4
1: Health Place. 2006 Jun;12(2):203-209.
Palmer RF, Blanchard S, Stein Z, Mandell D, Miller C. University of Texas Health Science Center, San Antonio Department of Family and Community Medicine, 7703 Floyd Curl Drive, San Antonio, Texas 78229-3900, USA.

      The association between environmentally released mercury, special education and autism rates in Texas was investigated using data from the Texas Education Department and the United States Environmental Protection Agency.

      A Poisson regression analysis adjusted for school district population size, economic and demographic factors was used.

      There was a significant increase in the rates of special education students and autism rates associated with increases in environmentally released mercury.

      On average, for each 1000lb of environmentally released mercury, there was a 43% increase in the rate of special education services and a 61% increase in the rate of autism.

      The association between environmentally released mercury and special education rates were fully mediated by increased autism rates.

      This ecological study suggests the need for further research regarding the association between environmentally released mercury and developmental disorders such as autism.

      These results have implications for policy planning and cost analysis.

      PMID: 16338635 [PubMed - as supplied by publisher]

By Anita Manning, USA TODAY

Will Stewart is bracing for a disaster: a flu pandemic that scientists and public health experts say in a worst-case scenario could cause worldwide calamity, kill millions of people and disrupt the global economy.
The Stewart family has stocked a closet in the basement with food should a flu pandemic strike. 

An engineer who lives on a farm in Loudoun County, Va., outside Washington, D.C., with his wife and two children, Stewart is stockpiling food, water, medicine and even guns to defend his family in the event of civil unrest.
Though his actions may seem over-the-top, he says, he is not overreacting, only preparing. "I've never felt panicked by this. I've just seen that this is likely to be so many months away, so let's take steps to prepare."
Having read about the so-far unstoppable spread of bird flu in Southeast Asia and into Eastern Europe, the H5N1 virus that has infected 134 people, killing 69, he knows it is one mutation away from having the ability to spread easily from person to person.
The threat of a flu pandemic has led governments and public health ministries around the world to make plans.
"Pandemics happen," U.S. Health and Human Services Secretary Mike Leavitt says. There have been 10 in the past 300 years, he says, and "we're overdue and underprepared" for the next one.
His agency has advised Americans to plan "as you would for other public health emergencies."
Stewart, who does risk assessments for engineering projects, is one of a focused minority of Americans who are going a bit further. While odds that a flu pandemic will occur in the near future are unknown, and in fact may be quite low, if it happens, the consequences are so serious that action is warranted, he says.
A cadre of prepared Americans believe it's important to be ready for a flu pandemic at least as deadly as the 1918 pandemic that killed roughly 50 million people worldwide, including 500,000 in the USA.
These people are talking to neighbors and relatives, making contingency plans and discussing their concerns online at websites such as fluwikie.com.
The site, launched six months ago, is visited by 3,000 to 4,000 people a day, says publisher Melanie Mattson of Falls Church, Va.
Judging from traffic to the site, Mattson estimates that thousands of people in the USA and Canada are taking steps to prepare for a pandemic.
This level of concern poses problems of its own, says Marc Siegel, an internist, associate professor at New York University and author of False Alarm: The Truth About the Epidemic of Fear (Wiley, $24.95).
"We're going to have a lot of problems if we keep alarming ourselves about things that aren't going to happen," he says. If the H5N1 virus starts to spread among humans, it could become less virulent, or it could fizzle out, he says.
Siegel doesn't discount the possibility of a future pandemic, only its likely imminence.
"There are a lot of disagreements among public health experts, but one thing everybody agrees on is there is no sense that this is about to happen."
Stockpiling medicine
Vaccines are being developed, but they may take years to produce. Many countries are stockpiling antiviral drugs Relenza and Tamiflu, which are thought to be effective in preventing or lessening the impact of the avian flu, and thousands of people have secured prescriptions, just in case.
U.S. health officials and infectious-disease specialists have discouraged individual stockpiling, citing shortages and the risk of widespread misuse leading to drug-resistant viruses, but some doctors disagree with that advice.
Washington , D.C. , internist Bruce Rashbaum says he has had "many, many patients ask for Tamiflu," and he has written more than 50 prescriptions for it. "It is useful for seasonal flu and has a five-year shelf life," he says.
Several patients have asked for multiple courses of treatment. "People are starting to panic," Rashbaum says. "These are smart, intelligent people."
No 'cavalry' to the rescue
Rashbaum says he won't write a prescription for multiple courses of treatment, but he doesn't see harm in allowing patients to keep one five-day treatment course (10 tablets) on hand.
"There's so much anxiety out there, and the medicine is really very benign," Rashbaum says.
Internist Grattan Woodson of Decatur, Ga., says that when he first started to read about the possibility of a pandemic, "it was hard as heck for me to believe we could be at risk for something like this."
"I couldn't come to terms with the fact that our modern hospitals and medical systems couldn't save us. Then I realized we are more vulnerable today than in 1918 because we live in cities, we're so utterly dependent on food being brought in from outside and on the electrical grid, and also we're much older. There are a lot of people alive today who are really frail, who are highly susceptible to flu."
In a disaster such as an earthquake or hurricane, help can come from outside the region, but "when we have a pandemic, there is no outside," Woodson says. "There won't be a cavalry coming over the hill to rescue us. We'll all be on our own, each town, each village, each neighborhood, and the neighbors are going to need to pull together to take care of each other."
Woodson, author of The Bird Flu Preparedness Planner (Health Communications, $4.99), has his own plan in place. (Related: A look at two approaches)
He will keep his office open as long as possible, then, if necessary, he will move out to a farm in the country and continue to practice medicine. He has supplies, solar collectors, a well, and yes, he has bought a handgun and a shotgun. "I'm concerned about the medical consequences of pandemic influenza," he says. "I think there could be quite a bit of illness and death."
That could "spill into civil effects, resulting in a period of anarchy and civil disorder, and that could result in more deaths. That's the reason to have a gun," he says. "I live very close to the city, and I think there's a possibility the police would not be able to function well here."
Woodson hopes his preparations will not be needed, but "I think we're getting ready to have a serious pandemic of influenza, and I think it's going to happen soon."
Stewart's plan of action
For several weeks, Stewart has been assembling a supply of water and food, enough to last three to six months.
He is buying equipment, such as rain barrels to capture fresh water and Mylar bags to store bushels of barley and soybeans. His home is solar-powered, and he has a well. He keeps a few sheep that could provide food if necessary, and he is prepared to provide a safe refuge for his immediate family, his siblings and their families.
He says he has a "varmint gun" at the farm and plans to buy one or two more weapons because, like Woodson, he believes that if employees are too sick to go to work, grocery shelves will empty quickly, and there could be panic.
"I believe there's going to be different classes of marauding people," he says. "There will be gangs just looting, five or eight people in a gang. Depending on how long this lasts, there could be marauders who are former military. So there will be four male adults in this house who know how to use firearms."
Peter Sandman, a risk analyst and consultant to international businesses and governments, including the HHS, says that in any situation of perceived threat, there are those, such as Stewart, who go to extremes.
"They periodically turn out to be right, but it's a bell curve, with one edge doing absolutely nothing and saying, 'Bird flu? What's bird flu?' " Sandman says. "That's a rather bigger edge" than the other extreme.
The goal of risk communication is to move people from the idea that "this is something for the government to worry about" to the attitude that "this may be serious. Let me consider what I can do and do what is practical for me, and then I'll get back to my normal life and stay vigilant, and if it comes, I'll be better prepared."
Sandman says of greater concern than the too-ready are those who do nothing: "the huge numbers of people who don't have three days' food in their house, and more to the point, who have not yet thought if there is a pandemic" what they'll need to do.
"That kind of thinking isn't nutty. It may turn out to be necessary, and if not, it doesn't disrupt your life. We want as many people as possible thinking about what a pandemic is like and what a severe pandemic is like."
The last ones, in 1957 and 1968, were mild. "It was a big deal for hospitals," Sandman says.
"There were not enough ventilators. Some schools closed down for a couple of weeks. The only thing you have to do to get ready for (a pandemic similar to the one in) 1957, if that's what's coming, is hope the feds know what they're doing. But if it's 1918, then it's not all medical," Sandman says.
"You don't have to go to the extreme of being a survivalist and moving to Montana. There's a middle ground."
He suggests buying such items as face masks. "You won't be able to get masks after the pandemic starts, but they're available now, and it wouldn't hurt to get a box of 50 or 100," Sandman says.
Think about what to do if doctors' offices are shuttered and hospitals overwhelmed. "If you have to treat a child at home, think, what do I need. It's not stupid to be thinking about it," he says.
"A big hunk of preparedness is emotional. When athletes prepare for the big game, they don't just swing bats. They imagine the game. If you want to be able to cope with moments of crisis, it helps to have thought about it."

Editors note: Sounds a bit like being earthquake prepared with some other precautions.

By Anita Manning, USA TODAY
Every winter, flu takes its toll on the health of Americans. But how great a toll is being questioned in a review published Saturday in the British Medical Journal.
Peter Doshi, a graduate student at Harvard University, says the estimate by the Centers for Disease Control and Prevention of 36,000 flu-related deaths each year is based on "flawed" statistics.
"I found a number of inconsistencies and poor assumptions being made," he says. An example is the CDC's use of "pneumonia and influenza" deaths, taken together, as a basis for estimating deaths caused by flu. He says that link is "arbitrary" and "has the effect of biasing their estimates of flu mortality."
Lab-confirmed flu cases and flu-related deaths, except for those in children, are not reported to the CDC, so estimates of cases are based on a variety of measures, including deaths from pneumonia or circulatory diseases during flu season compared with deaths from those causes when there is no flu around. If the pneumonia deaths jump in January and February, health experts assume some are caused by flu.

About 10% of pneumonia deaths are associated with flu, says William Thompson of the CDC's National Immunization Program, but flu also contributes to deaths from other causes.
If you go by death certificates alone, says Martin Meltzer, a CDC expert in health economics, almost nobody dies of flu.
"Somebody can have flu and go to a hospital and die of a heart attack, but he might not have had the heart attack if he hadn't had the flu," Meltzer says. "The death certificates don't read 'influenza,' " he says. "They read 'heart attack,' 'diabetes' and all the fancy things people write down because they don't know what they died of."
The statistical model used to come up with the estimated average of 36,000 deaths each year takes these less obvious cases into account, Meltzer says. They are deaths associated with flu, but not necessarily caused primarily by flu, he says.
"We think if you could prevent flu, you would prevent a large proportion of these deaths," Meltzer says.
Until 2003, the CDC had estimated 20,000 deaths per year, but in a study published in The Journal of the American Medical Association, of which Thompson was the lead author, researchers concluded that flu-related deaths had increased during the 1980s and 1990s to between 17,000 and 51,000 deaths annually, an average of 36,000. They attributed that partly to a rise in the number of elderly people, who are at higher risk of dying from flu complications, and to virulent strains circulating in the '90s.
Thompson's estimates were based on statistics reported between 1976 and 1999, and his analysis is "state of the art," Meltzer says. Only data from lab tests on hundreds of thousands of patients would provide greater accuracy, he says. "It's the best estimate we can do at the moment."

For the TACA members who have asked – it is the United Way season and TACA is a charity listed. Here is some more information.

The United Way of America is used by many large and small companies across the country to manage their employee-giving campaigns.  We are pleased to announce that donations to most United Way Campaigns can be directed to TACA. Most workplace campaigns take pledges in the last quarter of each year and offer variable payment methods for your gift in the following year. Campaigns often allow you to take out small amounts of money from your paycheck each month to fulfill your pledge.

For example, writing a single check for $300 may be a strain on your budget. But that same contribution, spread out over twelve months as a monthly $25 payroll deduction, may not be as difficult. Remember that even if your employer does not actively pursue an office-wide campaign, often they will have set up charitable giving options that you can use. Don't be afraid to ask what the company policies are.

Whether you are a seasoned contributor at your workplace or planning a first-time gift, please consider choosing or "writing-in" TACA as a recipient of your generosity. The detailed information below may help you make informed decisions about your contributions.

CANNOT AFFORD THE UNITED WAY DEDUCTION? THERE IS ANOTHER WAY! Many TACA Families are encouraging their co-workers to donate to TACA as well. Often the designation of charity is left blank. Tell your co-workers about TACA and ask for their support.

United Way of America

United Way of America has a network of 1300 local affiliates throughout the country. Most of these affiliates will allow you to designate TACA as your charity of choice.

Most United Ways do not encourage giving to non-member organizations and your workplace coordinator may not know this option exists - but it does! You can write TACA in under the donor option section as follows:

Talk About Curing Autism
P.O. Box 12409
Newport Beach, CA 92658
Tax ID # 27-0048002

For United Way designation use: Talk About Curing Autism (TACA) #TAC100

As always, thank you so much for your support!

Hello TACA members! Have you had a TACA library book, CD or video for over 2 months? Please remember – it is time to turn it back in!

We need to be able to share all the resources with all families so we can keep offering this service for free (no late fees!) Other families need access to the information and we need your help!!!

Please get those items back to the TACA library in January! It would help greatly.

If you cannot make the meeting to return the TACA library items, MAIL IT to TACA, P.O. Box 12409, Newport Beach CA 92658-2409. REMEMBER to include your name and the TACA location with the book!

THANK YOU FOR HELPING US!

FRANK’S LO CARB MARKET – has re-opened as LOS ALAMITOS NUTRITION
I'm very excited to let you know I've reopened the store at a new location. We are located in Los Alamitos on the border of Seal Beach. This store carries many of the gluten free, casein free items our kids need.

Store info:
Los Alamitos Nutrition
4292 Katella Ave.
Los Alamitos Ca 90720
(562)493-4105

Adapted Kung Fu

Shozuya Kung Fu holds an adapted Kung Fu class on Monday and Wednesday nights from 6:00 to 6:55 for children with Autism.  They currently have a couple of  openings.  If you are interested, you can contact them at 310-808-0778.  Their address is 2140 Artesia Blvd., Unit A, Torrance, CA  90504. 

Applegate Farms recently changed ingredients in their hot dogs, they eliminated honey and replaced it with sugar and they added lactic acid.  For my son, who has been on a strict SCD diet, this resulted in a severe stomach ache and projectile vomiting. 

When I finally called Applegate Farms and complained, they said I was the first person who had called about this.  After some research, they called me back to notify me that they would be removing all sweeteners. 

Unfortunately, they added the lactic acid to prolong the shelf life (basically as a preservative).  Lactic Acid is a high allergen food and a lot of people have problems digesting it.  I spoke with the meat department at Whole Foods in Redondo and they were not aware of the change in ingredients.  They also told me they don't have a problem with shelf life because they move the product so fast (so the lactic acid is unnecessary).

I was able to get the sugar removed with one simple phone call.  If we all band together, I believe we can get the lactic acid removed.  There isn't enough gf/cf and SCD foods available for our children as it is, let's not lose another one. 

Please call Diane at Applegate Farms (540)740-4121 as soon as possible and let her know we don't want the lactic acid in their hot dogs.

Together we can make a difference.

Thanks for your support,
Beth

More to come in 2006!

More to come in 2006!

FEAT BIOMEDICAL CONFERENCE 2006

FEAT’s Capital Autism Conference Series is excited to present its first BIOMEDICAL CONFERENCE, as follows:

• Date: January 14, 2006
• Place: Sacramento State University
• Time: 8:30am - 4:30pm
• Speakers :
  • David Kirby, Author “Evidence of Harm – Mercury in Vaccines and the Autism Epidemic – A Medical Controversy”
    Did mercury in vaccines cause an epidemic of autism, ADD, ADHD, speech delay and other childhood disorders? It is a disturbing, important book that examines both sides of this brewing controversy.
  • Dr. Jerry Kartzinel (DAN! Doctor and Pediatrician, Thoughtful House, Austin, Texas)
    Dr. Kartzinel will give an introduction to, and present the potential benefits of, various biomedical interventions and diet for children with Autism Spectrum Disorders (as well as ADD & ADHD)

Questions? Contact either:
- Tara K. Buran (Conference Chairperson) at 916-791-0542 or tkburan@comcast.net, or
Bruce Kaminski (FEAT Bd. of Directors) at 916-372-4752 or bruce.kaminski@feat.org

(Conference schedule & ticket information to follow. Vendors and exhibitors will be on hand to provide biomedical products, services, and information.)

PLEASE SAVE the date!!!! Please invite your pediatrician or DAN! Doctor to attend!

CRIMSON CENTER PRESENTS:

Family Seminars

• Location - 9606 Tierra Grande Suite 107 San Diego, CA  92126
• Scripps/Miramar area
• Date: Wednesday January 18, 2006
• Time: 6:30-8:30 P.M.

Options and Benefits of Recreational Therapies including music therapy, surfing and yoga

Presented by

Michelle Lazar, MT-BC & Jeremy Jensen MM, MT-BC
www.coastmusictherapy.com
Michelle is currently completing her graduate degree in special education and autism at San Diego State University. Jeremy has a Masters Degree in music therapy with an emphasis on neurologic music therapy.  They will share the benefits of music lessons, music in early intervention, music therapy, and music technology programs. 

Michele Rooney Harriman, M.S. Physical Therapist
www.kidspirationPT.com
Michele is a graduate of Columbia University (MS, PT) and New York University (BA, psychology/sociology) created Kidspiration Physical Therapy and Yoga.

Richard Sutera, surf instructor and special educator
www.purevibessurfing.com
Richard has extensive special education knowledge, including special education credential and master level experience, and provides special needs therapeutic ocean therapy.

RSVP 858 695 9415 to confirm date, time, & location

The Crimson Center cannot endorse any individual program.

ROK (Recover Our Kids Biomedical, a non-profit group) is pleased to announce Dr. Klinghardt will be presenting in Phoenix, AZ Jan 21 - 22, 2006 on Autism.  What a great opportunity to hear him speak on his treatments he is using for the kids with Autism.  He normally charges $500 per person and we happy to announce he is doing this for $50!! 

Attached is the conference flyer.  Please note early registration deadline due to limited seating.  This is filling up fast!

Please  visit http://vsan.org/rok-az/ to register or contact Cynthia McCluskie at (480) 585-9312.

Klinghardt has decided he will add an additional day.  The 2nd day is Family Constellation and The Five Levels Of Healing.  He is stating that through a demonstration, the entire family will be treated effectively.  He is vague and I'm sure on Saturday's seminar he will explain more.  There is a $50 fee for the ENTIRE FAMILY for Sunday's presentation.  People can register at the door for Sunday's conference since we are still pretty vague to exactly what it is he is doing (he is in Europe for the next 6 weeks and cannot be reached).  I do know Sunday's seminar will be at:  Resurrection Church  S. Evergreen, Tempe from 9:30 - 4:00pm.

Special Guests:

Dr. Bruce Shelton
Dana Gorman from www.DefeatAutismYesterday.com

Who Is Dr. Klinghardt Anyway?

I saw this on Mercola's site and thought I would forward.  Check out how much they were charging for his conference in 2000!  I still can't believe we can get him for $50 per person for an all day conference.  The guy is brilliant and you will walk away from this empowered with clarity for your child's healing journey.  Over a year ago, I was fortunate enough to watch video clips of Klinghardt during a seminar he had done and an office visit  with a child with Autism, and found what he was saying VERY INTERESTING.  I am more then eager to hear him speak!

I have no financial gains for this conference.  I merely want to see this Brilliant Doctor here in Phoenix to help guide not only my son's treatments, but to help others.  There are too few brilliant Doctors in the Autism world and too long of wait lists. (I personally am still waiting to see Dr. Yasko and it has been 2 years on her wait list and I still haven't gotten in!)  At least, with Klinghardt coming, you can have your child's Physician at the conference and Klinghardt states he will be describing how to treat the kids as he is doing it.

http://www.mercola.com/2000/oct/1/klinghardt.htm

Links to Language " training scheduled for Feb 21 & 22 in Placentia, CA.  It is for parents or teachers of autistic kids.  "Links to Language" is what most of the schools are using in Orange County along with the PECS system.  It is a way for the kids with autism to learn language.    The training is expensive ($255), but you get the training manual when you leave.  It is two straight days of training.

Anyway, the Links to Language people need at least 60 people to sign up for the class to make it happen.  So far there are only 30.  To make a reservation for the class you should call Sherri Carlisle at 714-966-4137.  The limit for the class is 120 people. 
You have to have your payment in to them by Feb. 3, 2006.

SAVE THE DATE!!
March 25, 2006

Involved Exceptional Parents’ Day

Keynote Speaker:
Mary Shea Ph.D.
Founder, Kids Included Together

Join us at the beautiful Handlery Hotel in Mission Valley for a day of fun and learning. Enjoy the largest resource fair in San Diego County!

For more information visit our website at:

www.iepday.org

Or call 858-576-2966

This year has flown by – like many before! I have reviewed some old TACA enewsletters (albeit they are a lot shorter than today’s!) and I have written 4 separate holiday greetings, well wishes, and year end closes. I cannot believe TACA - our community of families - is FIVE YEARS OLD.

During this holiday season, a dream came true for me to help families in need. I am so thankful for all the amazing support and outreach from our community to help the families who applied for “holiday cheer.” This entire process was a big learning experience and stressful for me, but incredibly rewarding. I could not have done this without the help of some amazing people – THANK YOU ALL FOR YOUR HELP! It was so inspirational how many TACA families, friends and vendors came to help. It was a team effort to roll this program out and thanks to Northrop for getting it off the ground. I hope we can continue this program and help the families in need throughout the year. This new program will be announced as soon as possible.

My biggest inspiration this year has come right from my home – my family. My husband continues to stay married and is wonderful to me despite my desire to work full time after I have retired from my job in 2004. His desire to help others is happily melded to my desire to help. Our daughter Lauren will graduate next year with credentials to teach K-6 children. When I asked her whether would she teach in a typical classroom or an SDC class – her response, “Typical education, Mom, with full inclusion because every kid deserves to be included.” She is amazing.

Then there is our Jeff. He works so hard and has a constant beautiful smile on his face. He had an amazing year. He continues to excel in his 2 nd grade typical classroom (with an aide) and is meeting all his academic goals. His skills with math, writing, reading and comprehension have improved dramatically and he is age appropriate on 95% of his goals in the classroom. His challenges still are in his social skills, speech, and auditory processing. These areas continue to show gains but are significantly delayed. Even with his delays, he is a long way from his diagnosis 6 years ago, when he was pronounced with a sentence of “no hope, no cure,” a myriad of health issues, and had no speech until almost age 5. Jeff is not cured of autism but continues to be our miracle and each day we are blessed by his love and his hard work.

Some of the main therapies and biomedical treatment continue to be the amazing team of professionals that work with Jeff on acquiring new skills and improving his old ones through Applied Behavioral Analysis (ABA), social skills, and speech therapy. From the biomedical treatments the highlights this year include the continuation of Methyl B12 and Hyperbaric Oxygen Therapy with the wonderful assistance of Dr. Jerry Kartzinel and his team. We have changed very little this year and these two therapies are the standouts for noticeably helping our little man.

Even though six years is a long time to work with dozens of therapists, specialists and medical professionals with thousands of hours of therapies and numerous trips to the specialists’ offices – I do get weary but never tire of Jeff’s amazing ability to rise to the occasion. Jeff continues to improve and continues to be our family miracle. If he works so hard with that constant smile – the least I can do is be his biggest cheerleader, friend, and hug master.

I am also so inspired by my TACA friends. Though there are down times, for the most part the TACA families have so much hope and work so hard for their children. I am blessed to have met you all and marvel in your ability to charge forward on behalf of our kids and community. For this I am thankful, too.

And it is important to recognize the amazing, gifted and tireless TACA volunteers for their efforts. The 100 TACA volunteers give their time in so many ways that without them there would be no TACA. Our vendors also deserve a word of thanks for their hard work in helping our children move mountains and in providing services to a special group of kids. Thank you.

This holiday season, we have much to be thankful for and much to work hard for. I hope your blessings can be counted by recounting the progress your child (or children) has made and the wonderful love they provide. Believe in them. Believe in all the possibilities and never EVER give up. There is so much hope and efforts we can facilitate in helping them achieve their potential. That is what this holiday season is all about.

Hugs, thanks, BE SAFE AND HAVE A HAPPY HOLIDAY SEASON!!,
Lisa A Jeff's mom

And Editor: Kim Palmer (thanks Kim!)

Web Page for TACA Group: www.tacanow.com
check it out and 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.IF YOU DO NOT WANT TO RECEIVE THESE EMAILS, just respond and I will be happy to remove you from the list.

P.S. TACA e-news is now sent to 2,110 people!
(This number represents families – 95%, and the rest are professionals.)