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SCHAFER AUTISM REPORT “Healing Autism:
No Finer a Cause on the Planet”
NOTE CALENDAR DEADLINE JULY 25 FOR AUGUST UPDATE
http://home.sprynet.com/~schafer/frm/calendar-form.htm
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Saturday, July 05, 2003 Vol. 7 No. 140
CARE
* Insurers Will Pay Family Caregivers
MEDIA
* Passive News Blackout in US Ends - New Mercury Research Finally
Reported
ADVOCACY
* Parents & Scientists Demand White House Conference on Autism Rise
* Rocking The 2004 Vote
TREATMENT
* Parents Search For Answers To Autism in NC
CARE
Insurers Will Pay Family Caregivers
[From The Star-Ledger. Originally from the LA Times in California. State laws vary.] http://www.nj.com/business/ledger/index.ssf?/base/business-4/105712310714385
0.xml
Ruben Castaneda was working late one night when he tried to lift two heavy pails of ink and herniated five disks in his back. The 1995 injury touched off a series of operations that dramatically changed his life and the life of his wife, Susan.
Ruben couldn’t be left alone after the surgeries, Susan said. He was in constant pain, and though determined to do things for himself, he’d fall. His doctor recommended that they hire home health workers, but the insurer never sent an aide, and the Castanedas of City of Commerce, Calif., couldn’t afford to hire one. Susan, a self-employed Spanish/English interpreter, had to pick up the slack.
“I couldn’t go out in the field -- I had to try to get jobs I could do from home,” she recalled. “All my days off were scheduled around whatever procedure he was going to have done.”
Like many people with a seriously injured spouse, Susan didn’t think about filing a claim with the workers’ compensation insurer for the care she gave her husband. Yet the family’s finances were being decimated. Because of Ruben’s lost wages and Susan’s inability to work while caring for him, the couple depleted their savings. They sold their motor home and boat and borrowed money from relatives, hoping to stay afloat long enough for Ruben to recover.
Caregivers such as Susan can be paid for their work even though they’re often performing it out of love and commitment, said attorney Ken Berman, who founded a law firm called CareLaw. But it’s the best-kept secret in the workers’ compensation market, he said.
Workers’ compensation laws allow insurers to pay for assistance care when workers have been so severely injured that they can’t fend for themselves. Although family members usually don’t think they can be compensated for providing this assistance, in many instances they can, industry experts said.
Even though workers’ compensation laws vary from state to state, payment for attendant care is available nationwide, said Keith Bateman, vice president and director of workers’ compensation at the Alliance of American Insurers in Downers Grove, Ill.
It neither matters whether the care is provided by a spouse, child or friend, nor whether the person providing the care previously was employed.
“You are not really compensating the spouse,” Bateman said. “You are providing an aspect of medical treatment.”
Family caregivers often say they were never told about the possibility of payment.
“In 20 years of doing this and handling literally thousands of cases, only once has the insurer volunteered this information,” Berman said.
Some caregivers say that insurers even deny that it’s an option. That’s what happened to Paul Smith, whose wife suffered a disabling spinal injury two years ago. Several months after she was injured -- and after he shelved his consulting work to attend to her needs six to eight hours a day -- the workers’ compensation insurer asked him to take her to a specific doctor two hours away from their Sacramento, Calif., home. He asked the insurer whether he could be compensated for his time to make up for the work he was losing.
“They said no. All they’d pay for was mileage, parking and tolls,” Smith said. “My attorney at the time said the same thing. It didn’t occur to me that they’d be wrong.”
Smith recently submitted a claim to the workers’ compensation carrier for three years of nearly full-time care at $21 an hour. He’s waiting for a response.
One reason consumers aren’t told about the possibility of compensation for attendant care is because it’s a gray area of the law, said Paul Glad, managing partner at the San Francisco law office of Sonnenschein, Nath & Rosenthal.
“There is not a specific code provision, but with a serious case, these types of arrangements can be approved by the court,” Glad said.
Indeed, in the vast majority of workers’ compensation cases, attendant care is not necessary. It’s prescribed only for injuries that cause the worker to lose the ability to perform activities of daily living -- eating, walking, dressing, bathing, getting in and out of bed and going to the bathroom.
In those cases, the insurance company should either send professional caregivers or compensate family members who provide the assistance, Berman said.
If a family member provides the care, he or she should keep detailed records about the services being performed, why and when.
The hourly rate paid the family caregiver has nothing to do with the amount they forgo from other work, Berman said. It’s calculated based on the cost of hiring a professional attendant to do the same work in the same geographic area. In cases Berman has handled, spouses were paid $12 to $40 an hour, depending on the nature of the care and the location.
Castaneda, who primarily cooked, cleaned and drove her husband to doctors’ appointments, got $12 an hour. Another client, Sandra Gartner of Las Vegas, submitted a claim for $40 an hour. The reason: She was called on to do skilled nursing care that included changing her husband’s IV, replacing bandages and draining his wounds. The insurer sent a nurse to their home to train her but never mentioned that she could be paid for assuming the nurse’s job.
“I felt guilty submitting a claim because I did this out of love,” Gartner said. “But the insurance company would have spent hundreds of thousands of dollars for nurses.”
In some circumstances, caregivers can be retroactively compensated. As long as a workers’ compensation case remains open -- until it’s concluded with a final settlement -- caregivers can submit claims, Berman said.
Rosalee Lambright, for example, received a check last week for $134,000. The former seamstress from Azusa has cared for her husband since he was injured 14 years ago.
When that care became so time-consuming that she had to quit her job, they lived on disability payments that amounted to a small fraction of their former income. She didn’t know she could be paid to take care of him.
“It was very tough,” she said. “It doesn’t take long to eat through everything you’ve got.”
But it wasn’t easy to get paid for her service, even after she filed the claim. She sued the insurance company, which settled on the day the trial was to begin, Berman said.
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MEDIA
Passive News Blackout in US Ends - New Mercury Research Finally Reported in mainstream press.
Vaccines may fuel autism epidemic
“One reason this isn’t getting the attention it needs
is that the Food and Drug Administration has very close ties
to the pharmaceutical companies, as does the Department of
Health and Human Services [HHS] and the Centers for Disease
Control. . . In some cases it appears that it’s a revolving
door and people leave government health agencies and go to
work for the pharmaceuticals, which I think have undue
influence on our health agencies.” - Rep Dan Burton
“Neither the Wyeth nor Merck pharmaceutical companies,
nor HHS or FDA, returned INSIGHT’s calls about this matter.”
[Readers might recognize that this news has been reported here weeks ago. While the new research has been extensively covered in the UK, it has been ignored by the US media -- until only just now. Source: Insight on the News.] http://infobrix.yellowbrix.com/pages/infobrix/Story.nsp?story_id=39906075&ID
=infobrix&scategory=Healthcare&
A new study indicates childhood vaccines containing a mercury- based preservative may be the culprits behind the surge in autism cases sweeping the United States. The mother of an autistic child wonders aloud when health officials will wake up to the epidemic that has claimed not only her son but hundreds of thousands of other children in the United States, with no end in sight. She muses, “Maybe someday this will be as important as SARS and we’ll get the same attention. God knows we need it.”
Autism is a severely incapacitating developmental disability for which there is no known cure. According to a recently released report by the California Department of Developmental Services (DDS) entitled Autistic Spectrum Disorders, Changes in the California Caseload: 1999-2002, the rate of children diagnosed with full- syndrome autism in the Golden State between 1999 and 2002 nearly doubled from 10,360 to 20,377. The report further revealed that “between Dec. 31, 1987, and Dec. 31, 2002, the population of persons with full-syndrome autism has increased by 634 percent.” That is a doubling of autism cases every four years, and the staggering increases are not limited to California.
Shots in the dark? Infants are being inoculated with vaccines containing toxic ingredients that can be harmful - or fatal.
According to data provided by the U.S. Department of Education, the increased autism rate in California is in line with the increases other states are experiencing. For example, in 1992 Ohio reported 22 cases. A decade later the number had increased by 13,895 percent to 3,057. In Illinois the rate of autism cases climbed from just five in 1992 to 3,802 - an increase of 76,040 percent. Mississippi, New Hampshire and the District of Columbia reported no cases of autism in 1992, but by 2002 the number of cases reported were 461, 404 and 144, respectively. Only Puerto Rico can claim to have an increase of less than 100 percent, with the remaining states reporting increases of at least 500 percent during the same period.
Although once considered rare, during the last two decades the chance of a child being diagnosed with autism has skyrocketed from one in 10,000 to one in 150. In California, full-syndrome autism now is the No. 1 disability among children and more prevalent than childhood cancer, diabetes and Down’s syndrome. It is estimated that within the next four years autism cases in the Golden State will exceed the total number of cases of both cerebral palsy and epilepsy. To get a better idea of how quickly the epidemic is spreading one need only consider that in 1987 there were 2,778 persons with autism in California. By 2002 the number had increased to 20,377, and in 2002 3,575 new cases had been added to the rolls, far exceeding the total number of cases in the state 15 years earlier.
For years there has been a debate about the cause or causes of autism, but the vast majority of finger-pointing has been directed at childhood vaccines as the culprit. And considering what is put into the vaccines injected into hours-old infants, it is easy to understand why they are at the top of the list of suspects: formaldehyde (used in embalming), thimerosal (nearly 50 percent mercury), aluminum phosphate (toxic and carcinogenic), antibiotics, phenols (corrosive to skin and toxic), aluminum salts (corrosive to tissue and neuro-toxic), methanol (toxic), isopropyl (toxic), 2- pheoxyethanol (toxic), live viruses and a host of unknown components considered off-limits as trade secrets. These are just part of the vaccine mixture.
For those who believe there are elements in vaccines that may be responsible for the increased number of autism cases and other neurological disorders, thimerosal currently is at the top of the list of possible culprits being investigated.
Despite official insistence that the evidence linking injected thimerosal to autism is inconclusive, the data suggest otherwise. In 1999 the National Academy of Sciences Institute of Medicine (IOM) must have thought there was something seriously wrong when it supported removal of thimerosal from vaccines, stating that it was “a prudent measure in support of the public goal to reduce mercury exposure of infants and children as much as possible.” The IOM further urged that “full consideration be given to removing thimerosal from any biological product to which infants, children and pregnant women are exposed.”
A recently published study in the Journal of American Physicians and Surgeons by Mark Geier, M.D., Ph.D., and president of the Genetic Centers of America and his son, David Geier, president of Medcon Inc. and a consultant on vaccine cases, was titled “Thimerosal in Childhood Vaccines, Neurodevelopment Disorders and Heart Disease in the United States.” It presents strong epidemiological evidence for a link between neurodevelopmental disorders and mercury exposure from thimerosal-containing childhood vaccines.
Specifically, the authors evaluated the doses of mercury that children received as part of their immunization schedule, then compared these doses with federal safety guidelines. Furthermore, to compare the effects of thimerosal in vaccine recipients, the incident rates of neurodevelopmental disorders and heart disease reported to the government’s Vaccine Adverse Events Reporting System were analyzed. The results were dramatic. The report revealed that “U.S. infants are exposed to mercury levels from their childhood- immunization schedule that far exceed the EPA [Environmental Protection Agency] and FDA [Food and Drug Administration]- established maximum permissible levels for the daily oral ingestion of methyl mercury.”
The authors concluded that “in light of voluminous literature supporting the biologic mechanisms for mercury-induced adverse reactions, the presence of amounts of mercury in thimerosal- containing childhood vaccines exceeding federal safety guidelines for the oral ingestion of mercury and previous epidemiological studies showing adverse reactions to such vaccines, a causal relationship between thimerosal-containing childhood vaccines and neurodevelopment disorders and heart disease appears to be confirmed.”
Smoking gun: The Geiers’ research presents evidence for a link between neurodevelopmental disorders and vaccines containing thimerosal.
It is no secret among government and health officials that mercury is toxic and causes serious adverse reactions. In July 1999 the American Academy of Pediatrics and the U.S. Public Health Service issued a joint statement calling for the removal of thimerosal from vaccines. Five years after the joint statement, however, it still is difficult for parents and physicians to be sure that the pharmaceutical companies have indeed removed the toxic substance from their vaccines.
According to Mark Geier, “The 2003 Physicians’ Desk Reference [PDR] still shows childhood vaccines containing thimerosal, including diphtheria, tetanus and acellular pertussis. DTaP, manufactured by Aventis Pasteur, contains 25[mu]g [25 micrograms] of mercury, Hemophilus influenzae b (Hib) vaccine manufactured by Wyeth contains 25[mu]g of mercury and pediatric Hepatitis B vaccine, manufactured by Merck, contains 12.5[mu]g of mercury.”
Geier continues, “In addition, the influenza vaccine that is recommended for an increasing segment of the pediatric population in the U.S. also contains 25[mu]g of mercury. Assuming that the labeling is correct, it is possible that children in the U.S. in 2003 may be exposed to levels of mercury from thimerosal contained in childhood vaccines that are at higher levels than at any time in the past. Possible total childhood mercury in 2003 is more than 300[mu]g.”
Whether the “labeling is correct” is the question du jour. According to Len Lavenda, a spokesman for Avenus Pasteur, the maker of DTaP, “Avenus only sells the DTaP vaccine in the preservative- free formulation. The PDR references both the single and multidose. However, when we received the license for the preservative-free we ceased sales of the multidose vial. For some reason, the package insert takes much longer to revise than one would expect. I believe it is at the FDA waiting for approval, but the fact is we do not sell or market that product. In March 2001 we stopped all sales of that product in the preservative formulation. We did not recall the product at that time because it was our belief that if we did children may go unimmunized. It’s been two years since anyone has been able to purchase the preservative formulation from us.”
Lavenda continues: “The package insert talks about both the single and multidose vials and it says that the single-dose vial is preservative-free, and that is all that is sold. The PDR is out- dated, but parents don’t have to worry about their children being administered 25[mu]g of thimerosal. It just takes time to get the paperwork caught up. The current package insert does not accurately reflect what is being marketed.”
Geier is astounded by Lavenda’s admission. “If this is true, they should be in jail. They can’t have an insert on a drug that is totally wrong. It is against all regulations. If I’m a doctor and I’m giving you a shot and the insert says such and such is in the shot, it had better be in it. If doctors can’t rely on the instructions that come with what we’re injecting then all bets a\re off. This is a far worse admission than admitting that thimerosal is still in the vaccine. There are at least 15 laws that say the insert has to match what is in the product. This is absolutely horrendous. In my entire career in medicine I have never heard of a drug company claiming that what’s in the insert and the accompanying product don’t match. This is total mislabeling and fraud by their own admission. Legally they should be forced to close down because our clinical decisions are based on their labeling.”
Assuming that the package inserts are correct, Geier tells insight, “The EPA limit is 0.1 micrograms of mercury per kilogram body weight per day. It doesn’t take a genius to do the calculations when on their day of birth children are given the hepatitis B vaccine, which is 12.5 micrograms of mercury. The average newborn weighs between 6 and 7 pounds, so they would be allowed 0.3 micrograms of mercury but in this one shot they are getting 12.5 micrograms. That’s 39 times more than allowed by law. And it gets worse when you consider that children are getting multiple vaccinations at 2 months. And this limit is for oral ingestion and not injection, which is much worse.”
Recommended Childhood and Adolescent Immunization Schedule for The United States According to the 2003 Physicians’ Desk Reference Rhonda Smith, a spokeswoman for the federal Centers for Disease Control and Prevention (CDC), tells INSIGHT that, except for mere traces, thimerosal has been removed. “All routinely recommended licensed vaccines,” says Smith, “that are currently being manufactured for children in the U.S., except influenza, contain no thimerosal or only trace amounts - a concentration of less than 0.0002 percent.” But according to the 2003 immunization schedule and the package inserts, there appear to be a number of childhood vaccines that still contain mercury, including those for tetanus and diphtheria.
This scenario becomes even more bizarre when one further considers that thimerosal is not a necessary component in vaccines. It first was introduced by pharmaceutical giant Eli Lilly and Co. in the 1930s and is added to vaccines only as a preservative - the theory being that multiple doses are taken from the same bottle and that thimerosal will protect against contamination. However, according to Geier, “the solution to any such problem is to make vaccines available in a single dose, which will cost the pharmaceuticals about one penny more. What is interesting is that if you look up the mumps, measles, rubella [MMR] vaccines in the PDR you’ll see that they do not contain thimerosal because it would kill the live virus. The MMR is available in multi-dose packaging and, yet, there is no preservative nothing. What they did was put a label on it that says ‘This product does not contain preservatives. Handle with care.’ It’s that simple.”
Geier insists, “I’m pro-vaccines, but the bottom line is that our kids are getting massive amounts of mercury. Mercury has been withdrawn from everything, including animal vaccines, yet we keep injecting it into our children. Everyone should absolutely refuse to take a vaccine shot that has thimerosal in it, and they should insist on reading the vaccine package insert. Our data showed that the more mercury children received in their childhood vaccines the more neurodevelopment disorders there are. We’ve looked at this every possible way and every time there’s massive evidence to support it.”
Personal story: Rep. Burton, standing second from left, became an advocate for victims of autism when his grandson became autistic after receiving nine vaccines in one day.
So, if everyone acknowledges the toxicity of mercury and top U.S. health officials have called for its removal, why is thimerosal still in vaccines? “Maybe,” concludes Geier, “the mercury isn’t being taken out all at once because if the pharmaceutical companies did that you would see an unbelievable change in the rate of autism and there would be massive lawsuits. If you look at the graphs now they go up and up. If you stop the thimerosal all at once you’d see the numbers fall dramatically.”
Rep. Dan Burton (R-Ind.), a longtime advocate for victims of autism, has a grandson who became autistic after receiving nine vaccines in one day. Burton recently sent his second request in as many years to the White House asking for a conference of scientists, researchers and parents to look into the causes of autism. The Indiana lawmaker tells INSIGHT, “There is no doubt in my mind that the mercury in vaccines is a major contributing factor to a growing number of neurological disorders among children, but in particular autism.”
Burton explains that “thimerosal is a toxic substance - mercury - and should not be put in close proximity of people, should not be injected into people, especially children who have a newly formed immune system that may not be able to handle it. To my knowledge there never have been long-term tests on thimerosal and we never should have used mercury in vaccines, period. Now what we’ve got is an epidemic that is absolutely out of control.”
The Indiana congressman continues, “One reason this isn’t getting the attention it needs is that the Food and Drug Administration has very close ties to the pharmaceutical companies, as does the Department of Health and Human Services [HHS] and the Centers for Disease Control. I’ve said in the past that in some cases it appears that it’s a revolving door and people leave government health agencies and go to work for the pharmaceuticals, which I think have undue influence on our health agencies. Of course, they may not want to look at this because there’s a possibility that large claims would be filed and the pharmaceutical companies would have to cough up the money to take care of these kids who have been damaged.”
Burton means business. He insists, “The FDA, CDC and HHS should put out in a very public way the dangers of mercury, but as soon as they do it w ill amount to an admission that their mercury is causing these problems. So the reports that come out of the FDA, CDC and HHS use ambiguous terms. Well, if they’re not sure, and there’s the remotest possibility that mercury in vaccines could cause autism, they ought to get thimerosal off the market. Too many kids are being ruined for life because of this stuff.”
Barbara Loe Fisher is founder of the National Vaccine Information Center, a charitable organization dedicated to the prevention of vaccine injuries and deaths through public education. Fisher tells INSIGHT, “There are many things in vaccines that could be causing these disorders, and thimerosal is only part of the problem. In the last 20 years, we’ve gone from giving children 23 doses of seven vaccines to 38 doses of 12 vaccines. I think the mercury is part of it for some kids, though I’m not sure it’s the answer for all.” But this is a no-brainer, says Fisher. “Mercury shouldn’t be in vaccines. They’ve taken it out of everything else so why not the vaccines? The one thing that people really need to look at is the dramatic rise in chronic disease and disabilities in our kids in just the last two decades. You have to admit that there is something occurring that a growing number of children cannot get through without being immune-system and brain-system damaged. And what is the one thing that we expose every child to? Those vaccines.”
Fisher concludes, “I’ve always argued that public health is not measured only by an absence of infectious disease. It also is measured by the absence of chronic disease. By that score we get a big fat ‘F.’ So we don’t have measles and mumps, but look what we have now. It’s just really
simple: Take the mercury out and let’s see what happens.”
Even so, based on the Aventis admission that the package insert does not reflect what is in the vaccine, it will be difficult to know when, if ever, the thimerosal actually has been removed. This skews the data about the relationship between thimerosal and autism. More important, it means parents cannot be sure the vaccinations their children receive are free of mercury.
Neither the Wyeth nor Merck pharmaceutical companies, nor HHS or FDA, returned INSIGHT’s calls about this matter.
“The [vaccine] package insert does not accurately reflect what is being marketed.”
[Kelly Patricia O’meara Is An Investigative Reporter For Insight Magazine.] Copyright Washington Times Corporation
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ADVOCACY
Parents and Scientists Demand White House Conference on Autism Rise Press Conference/Rally called for July 23
[From V.I.A.L. - Vaccination Information and Liberation.]
An important press conference and indoor rally will be held in Washington on July 23 to discuss the rise in autism and the need for a White House Conference to address it.
After Congressman Dan Burton sent a letter to President George Bush late last year requesting a White House Conference to investigate the rise in autism, a reply in template letter by the Bush Administration suggested that President Bush was too busy.
A second request sent out by Congressman Burton on May 15th has received no response.
Autism continues to rise. Thousands of parents and many scientists think it is imperative to urge President Bush to hold an autism conference at the White House as soon as possible.
On July 23, a press conference will be held in Washington to discuss this important issue. We want to understand why such a devastating epidemic is not getting well-deserved attention from the White House while strongly urging President Bush to reconsider. To help us make our point, several scientists will be speaking on our behalf. We need you there.
We need to let the media know that parents, grandparents and caregivers will not stop this battle. Please let us know immediately if you are able to come to Washington on Wednesday, July 23rd, 2003. Your confirmation will allow us to plan for the size of the room and number of chairs needed, room configuration for set up of media equipment, materials, etc.”
You’re invited: Press Conference Wednesday, July 23, 2003
Washington, DC 9:30 a.m. (subject to change) Location To Be Announced
Scheduled to Appear: Congressman Dan Burton (R - IN, Congressman Dave Weldon (R - FL), Dr. Mark Geier, Dr. Boyd Haley, Lyn Redwood, Scott Bono, Laura Bono, Speakers will be added as they are confirmed.
For more details please contact: Jo Pike, JPiker@aol.com,
Phone: 843-423-4678 or Laura Bono ldbono@nc.rr.com Phone: 919-403-9443
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Rocking The 2004 Vote
[From an Unlocking Autism announcement.]
In 2001, Unlocking Autism brought you The Power of ONE! In 2002, Unlocking Autism brought you The Power of ONE! I.D.E.A.
We know that the autism community has the potential to be a powerful political force in 2004.
So Its Time To Upgrade From The Power Of One! To The Power Of 1.5 (Million That Is!) April 2004 An estimated 1.5 million people in the United States have autism. There are roughly 3 million parents and 6 million grandparents and Millions and Millions of Siblings, Aunts, Uncles, Cousins, Family Friends, Neighbors, Teachers, Therapists and physicians.
That is One Big Block Of Voters.
We felt it would be perfect to announce on this very special day for our country, our plans to help families in their fight for the freedom and independence of the ones they love with autism. Unlocking Autism is proud to announce four days of power packed activities in Washington, DC from April 21-24 in 2004.
Save the dates and plan to attend: Wednesday, April 21, 2004 Congressional Hearings Reception with Members of the Congressional Autism Caucus on Capital Hill Thursday, April 22, 2004 The POWER of 1.5 Conference. Friday, April 23, 2004 Mini-Rally at Capital Hill Congressional Autism Caucus Meeting Storming Capital Hill Saturday, April 24, 2004 The “Let’s ROCK the 2004 VOTE” - Power of 1.5” Rally at the base of the Lincoln Memorial Get a sneak peak at our new 2004 Political Advocacy Shirt by visiting our website at www.unlockingautism.org Click on “DC Events” at the top. These shirts will be available at our site next week. Also, keep your eyes peeled in the next couple of days for new developments for all the events we have planned. We’ve Got The Power! So, Together...
Let’s Rock The 2004 Vote!
* * *
TREATMENT
Parents Search For Answers To Autism in NC
[In the “Charleston Gazette.] http://infobrix.yellowbrix.com/pages/infobrix/Story.nsp?story_id=39903668&ID
=infobrix&scategory=Healthcare&
Charlotte, N.C. - Little by little, mercury is coming out of Drew Dabney’s body. As it departs, Drew’s parents say their little boy is returning.
The 3-year-old makes eye contact again. He laughs. And one memorable day last summer, he said “Mama.” His mom hadn’t heard that since he was 15 months old.
Kim and Bailey Dabney are among a growing number of parents nationally who are treating their autistic children with biomedical therapies such as chelation, dietary restrictions, vitamins and enzyme supplements.
The treatments are largely unproven. Some, like chelation, which uses chemical compounds to remove heavy metals from the body, are controversial and expensive.
But these parents say traditional medicine offers few answers about autism, so they’ve sought their own, reading books, attending conferences and networking with other parents. The treatments won’t do any harm, they say, and they feel they owe it to their children to try them.
“There is no proven cure. No one has it,” says Kim Dabney, who lives in Charlotte, N.C. “All of us parents are out there trying to find our own solutions.”
Autism diagnoses have soared in recent years. Just a decade ago, the disorder affected an estimated 1 per 2,500 children. Recent estimates are as high as 1 in 250. For example, in 1990, North Carolina public schools had 704 students with autism diagnoses. In December 2002, that number was 3,996.
Why such an increase? Experts disagree. Some say it reflects better early interventions and a broadening of autism’s definition. A generation ago, some children now seen as autistic would have been diagnosed as retarded or psychotic.
But some other experts suspect the culprit is mercury from thimerosal, a preservative used until recently in many childhood vaccines.
While most children’s systems expel the toxic metal, some can’t get rid of it, some researchers and doctors say. They argue that the autism epidemic can be traced to a surge in the ‘90s in the number of required childhood vaccines. That surge raised the amount of mercury children received. They contend that mercury caused brain damage in those unable to expel the toxin.
Most vaccine manufacturers stopped using thimerosal about three years ago, after the American Academy of Pediatrics and Public Health Services urged its removal as quickly as possible. Government health experts deny a proven mercury-autism link, but many parents are convinced the link is there. That’s why they’re using chelation (pronounced kee-lay-shun) to get the toxin out of their children’s bodies.
Drew received multiple thimerosal-containing vaccines as a baby, but his family believes the mercury in the flu shot he got at 15 months pushed his system over the edge.
First, he broke out in a rash. Then the diarrhea began. His personality changed. He stopped speaking, ceased making eye contact and screamed at the slightest things - a light being turned off, a door opening.
“Drew was gone. He didn’t know me,” Dabney says.
The Dabneys enrolled Drew in speech and behavioral therapies often prescribed for autistic children. But Dabney’s research and discussions with other parents of autistic children persuaded her to take additional steps as well. She took Drew off wheat and dairy products because she read that many autistic children can’t properly digest them. She gave him cod liver oil, along with other supplements designed to help his digestive problems. It’s clear the diet and supplements help, she says. “I know if I mess up on his diet for one day, he regresses.”
She also began chelation therapy with a doctor, but halted it because the chelation pills caused a yeast overgrowth that created troublesome side effects.
Then, last summer, Dabney heard Dr. Rashid Buttar of Cornelius, N.C., speak at a local conference. Buttar explained how he used a lotion form of chelation drugs that doesn’t produce the side effects that can accompany oral drugs. He described how the treatment had helped his own son, now 4 years old.
Since October, Dabney has been rubbing the lotion into Drew’s wrist and forearm every other day. Regular analysis of the boy’s urine and stool show that his body is eliminating mercury and other heavy metals. The Dabneys plan to continue until the treatment stops pulling out metals. That could take up to two years.
Every few weeks, Dabney meets with mothers of autistic children to share tips and discuss progress. She knows at least 30 in the area who are doing chelation therapy.
Some, like Pam McCarthy, travel out of state to get treatments. McCarthy takes daughter Kallie, 5, to Dr. Stephanie Cave of Baton Rouge, La. Cave is a leading proponent of a treatment known as the DAN (Defeat Autism
Now!) Protocol, which usually includes chelation, diet restrictions and supplements.
But many autism experts remain skeptical of such treatments. Lee Marcus is clinical director of the Chapel Hill, N.C., office of the TEACCH program. TEACCH stands for the Treatment and Education of Autistic and Related Communication-Handicapped Children. Many young autistic children make progress as they grow, he says, even without interventions, so it’s impossible to attribute progress to these biomedical treatments.
“You ask any pediatrician in Charlotte, they’re going to say, ‘Oh, that poor, pitiful, desperate woman,” McCarthy says. “My argument is read what I’ve read, walk a mile in my shoes and tell me you wouldn’t be doing the same thing.”
Resources: For information about biomedical treatments, the Autism Research Institute http://www.autism.com/ari.
[The preceding copyright article is an unedited news clipping provided and intended for our readers’ individual educational or research use. The Schafer Autism Report makes no treatment endorsements or recommendations.]
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Lenny Schafer, Editor mailto:edit@doitnow.com
Sources: Edward Decelie Richard Miles Ron Sleith Kay Stammers
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