Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 http://www.statesman.com/news/content/news/stories/local/05/04/0504thoughtful.ht\ ml AUTISM TREATMENT Austin center charts different course on autism Thoughtful House supporters say children make big improvements there; mainstream doctors call treatments unproven. By Ann Roser <http://www.statesman.com/news/content/news/stories/local/05/04/mailto:maroser@s\ tatesman.com> AMERICAN-STATESMAN STAFF Sunday, May 04, 2008 travels from northern Louisiana with her four sons to a tan building on a hillside in Rollingwood for the kind of medical attention she says they can't get anywhere else. Mainstream medicine calls autism lifelong, but says that because of the treatment her 9-year-old has received at the Thoughtful House Center for Children, he is " not autistic anymore. " She credits the center with improvements in her other sons - two of whom struggle with attention deficit disorders, she says, and another with asthma. Since it opened in 2005, Thoughtful House has seen about 2,500 patients, officials there said. The nonprofit has attracted celebrity supporters in Austin and parents from around the world who say mainstream doctors offered them little help - and no hope - for their children. They say their children are recovering from autism at Thoughtful House. But government scientists, other researchers and many mainstream doctors have repeatedly challenged the theory on which Thoughtful House anchors much of its work, and they say there is no credible science behind many of its prescribed medical treatments. Those include procedures that even the doctor who oversees them at Thoughtful House says haven't been proved effective on autistic children through large scientific studies, such as a drug therapy for removing heavy metals from the body called chelation that some doctors consider dangerous. The father of the autism theory is Thoughtful House's executive director, Wakefield, a British-born gastroenterologist.. He has theorized that the steep rise in autism could be linked to the three-in-one MMR vaccination for measles, mumps and rubella that toddlers get. Autism is a spectrum of disorders ranging in severity and affecting about one in 150 people. People with autism generally have trouble communicating and interacting with others and exhibit odd or repetitive behaviors. Though most doctors say improvements can occur, especially when behavioral and other therapies start early, they believe there is no cure. Under Wakefield's theory, live measles virus, apparently from the MMR vaccine, causes gastrointestinal problems such as abdominal pain, diarrhea and constipation in certain children. Toxins then leak from the intestines into the bloodstream and enter the brain, causing once-normal children to develop autism. Wakefield and his research collaborators named this combination of autism and bowel problems autistic enterocolitis. Mainstream medicine has not found evidence of such a condition. " I don't think there is any specific gastrointestinal problem that is associated with autism, " said Dr. , chairwoman of an expert panel on autism for the American Academy of Pediatrics and a retired professor of pediatrics at the University of Texas Health Science Center at San . " Autistic enterocolitis has not been proven to exist. " Wakefield was the lead author of a 1998 paper in The Lancet, a prestigious British medical journal, that first suggested a link between the MMR vaccine and autism. That report unleashed a worldwide vaccination scare; only recently have immunization rates begun to rebound in Britain. But his theory has made him a hero to a vocal group of parents and leaders of autism organizations who consider Wakefield a latter day Galileo persecuted by a close-minded medical establishment. " He's a hero because he's brave enough to tell the truth, " said from her home in Ruston, La. " He has given a voice to all of us. " A 'fatal conflict of interest' Wakefield says he is not anti-vaccine, but he believes some children have weakened immune systems that may be overwhelmed by the MMR or othermultiple vaccines, which he contends have not been adequately tested for safety. He has suggested separating the MMR into individual shots or spreading out vaccinations over a longer time - a strategy mainstream medicine does not endorse. Wakefield concedes that many questions remain unanswered. " I don't know what causes the majority of autism cases. No one does, " he wrote in a recent e-mail. In the wake of The Lancet paper, the U.S. Institute of Medicine and large studies in Europe concluded that the MMR vaccine is safe and there is no evidence that it causes autism. Since then, the controversy has spilled into the courts and other government forums. Cedillo, a 13-year-old from Arizona and a Thoughtful House patient, is the lead plaintiff in a class-action suit against the U.S. government on behalf of 4,900 others who claim their autism was caused by vaccines. After publishing the 1998 paper, The Lancet said it learned that Wakefield had been paid about $90,000 by Britain's Legal Aid Board to study the MMR vaccine for a lawsuit against its manufacturers. Wakefield told the American-Statesman in 2004 that the money went to London's Royal Free Hospital School of Medicine, where he had worked. The board eventually dropped its support for the suit, citing a lack of evidence linking the vaccine to autism, according to published reports. The Lancet's editor told British media in 2004 that he considered the $90,000 payment a " fatal conflict of interest " that almost certainly would have caused the journal to reject the paper. That year, 10 of Wakefield's 12 co-authors retracted the paper's interpretation, saying there was insufficient evidence to suggest a link for the MMR vaccine, gastrointestinal illness and autism. Wakefield has never wavered. Britain's General Medical Council, which regulates doctors, is now seeking to cancel Wakefield's British medical license, charging among other things that he was dishonest in obtaining the Legal Aid money, failed to disclose to The Lancet his involvement in a patent application for an alternative measles vaccine and took blood from children at his son's birthday party for research samples, paying them about $10 each. Two of his co-authors also face allegations in connection with The Lancet study. All three are accused of causing children to undergo unwarranted invasive procedures, including colonoscopies and spinal taps, according to council documents. All three have denied wrongdoing, and Thoughtful House Director of Operations Anissa Ryland said the allegations against Wakefield " were based on misinformation and incomplete knowledge of the facts. Not one patient or family has ever made a complaint against Dr. Wakefield, and he has acted at all times in the best interest of the children. " As the months-long hearing continued this month in London, Wakefield testified that while he was unfamiliar with ethical guidelines on research involving children, he relied on colleagues with expertise in that area, according to press reports in England. Thoughtful House says Wakefield's findings on intestinal disease and autism have been confirmed by numerous independent researchers, including in studies in the United States, Italy and Venezuela. Wakefield is the co-author of most of those published studies. Former Wakefield colleagues wrote some of the others and in some cases received research funding from charities Wakefield headed. Thoughtful House also says Wakefield's work has been confirmed by a study made public in 2006 by , a Thoughtful House adviser and an assistant professor at Wake Forest University's Institute for Regenerative Medicine, and others, including Dr. Arthur Krigsman, a New York pediatrician and gastroenterologist who is one of the two physicians treating children at Thoughtful House. But said the study is " not close to being published. " He also cautioned that it won't confirm the MMR vaccine causes autism. said although he knew of no problems with The Lancet paper, he knew of no other major study that replicated Wakefield's work. From Austin, Wakefield continues to conduct research on the theories he laid out in The Lancet paper, often using blood and tissue samples from patients at Thoughtful House. High-profile loyalists Wakefield resigned from hisLondon medical school job in 2001 - hewas quoted in news reports as saying he was asked to go " because my results are unpopular " - and came to the United States that year to continue his work. He already had supporters, including Liz Birt, an Illinois attorney who had brought her autistic son to England in 1999 to see if Wakefield could help him. Birt, who died in a car wreck in 2005, created a nonprofit organization, Medical Interventions for Autism, with Wakefield as president, to finance his research, according to IRS documents and published interviews with Birt. That nonprofit laid the groundwork for Thoughtful House, raising $1.2 million in 2004 alone, according to IRS documents. Of that, $1 million came from and Jane of New York, part of the family that founded the & health care products and services company. The s' son had intestinal problems and was seeing Krigsman, and Jane said she became interested in supporting Wakefield's research after attending a 2001 conference by Defeat Autism Now, a program of the Autism Research Institute. The institute promotes alternative treatments for autism, and many Thoughtful House parents say they met Wakefield or heard of Thoughtful House at Defeat Autism Now conferences. , now co- managing director of the Thoughtful House board, said her son was misdiagnosed as having autism elsewhere but is actually learning disabled. Wakefield's work also has attracted prominent Central Texans as supporters: Former Dell Inc. executive Charlie Ball and his wife, Troylyn, whose son struggled with physical and developmental problems, were founders of Thoughtful House. Wakefield said he chose Austin because of its " wonderful community spirit " and the region's lack of " effective medical services " aimed at autistic children. Others joined as board members, includingformer major-league baseball player and Texas Longhorn Greg Swindell; former Dell executive Nater; Robison of the Dixie Chicks; film producer Avellan, the former wife of director ; and Dr.Deborah Peel, an Austin psychiatrist and the founder of a national consumer organization, Patient Privacy Rights. Martie Maguire of the Dixie Chicks and her husband, Gareth, are Thoughtful House advisers. In January 2005, Thoughtful House began offering education services, and later that year, on-site collaborators started providing behavioral and nutritional services, according to Ryland, the operations director. Thoughtful House says on its Web site that it is " fighting to recover children with developmental disorders " such as autism, attention deficit disorder and nonverbal learning disabilities. Mainstream medicine treats autism mainly with speech, occupational and behavioral therapies. Thoughtful House collaborates with the Center for Autism and Related Disorders, which has an office on the Thoughtful House property and uses one of those mainstream therapies, Applied Behavior Analysis. Research shows that the intensive therapy - which uses a variety of techniques to change behavior, including positive reinforcement - is effective for autism. Thirty-five percent of patients at Thoughtful House take part in research overseen by Wakefield, Ryland wrote in an e-mail. (Thoughtful House officials declined to be interviewed in person or give a tour of the facility.) She said those patients are already getting blood work or a colonoscopy as part of their care and consent to donate extra blood or tissue to research. Thoughtful House has been offering medical services since January 2006, Ryland wrote.Wakefield has no medical license in the United States and does not treat patients, leaving that work to Thoughtful House's physician collaborators, Krigsman and Jepson, a former emergency medicine doctor. Jepson has a son with autism and wrote a 2007 book, " Changing the Course of Autism, " with Jane . Children who go to Thoughtful House may undergo a series of tests to be diagnosed, according to the center's Web site. If they have gastrointestinal problems, Krigsman might perform an endoscopy at an Austin surgery center - a procedure in which the doctor uses a thin tube to examine the gastrointestinal tract. Colonoscopies, a type of endoscopy, typically involve sedating the patient. Krigsman had been performing endoscopies on children at Lenox Hill Hospital in New York until he left there in December 2004. He sued the hospital, claiming it was wrongly trying to restrict his hospital privileges by alleging that he was doing endoscopies that were not medically necessary, he testified during the Cedillo court proceedings.. Krigsman's suit was dismissed on procedural grounds. After diagnosing a patient, Thoughtful House offers a variety of treatments that may include vitamin and mineral supplements, antifungal medications to treat an overgrowth of yeast in the intestines and a strict diet that limits certain grains and dairy products, according to parents. Jepson also prescribes chelation for some Thoughtful House patients. The procedure involves delivering drugs intravenously, orally, by suppository or topically to remove heavy metals from the body such as mercury, an ingredient in childhood vaccines until it was discontinued in 2001 (it is still used in flu shots). In his book, Jepson said metals from vaccines, the environment or other sources can damage children's brain cells, intestinal tracts and immune systems. Pediatricians and mainstream researchers say they are especially concerned about the use of chelation in autistic children, noting it's approved by the Food and Drug Administration only to remove lead from the body. It's not uncommon for doctors to employ " off label " treatments, but critics cite the 2005 death of a 5-year-old autistic boy who was given the wrong drug during chelation therapy in Pennsylvania. Jepson says in his book that it's difficult to diagnose heavy metal toxicity and there are no standards for determining when an individual should get chelation or for how long. Still, he wrote that " thousands of autistic children have been chelated by various means, and anecdotal reports are favorable, " and he considers chelation to be " generally safe and well tolerated if done under appropriate medical supervision. " Children with autism improve with it, he wrote, even though, " to date, no controlled trials of chelation in autistic children have been published. " Gap in state, local oversight Thoughtful House also recommends that some patients undergo sessions in a hyperbaric oxygen chamber, a technique used in hospitals for gangrene and wounds and for treating divers with the bends. Keefe, a Dallas lawyer, said Thoughtful House recommended chelation, a special diet, hyperbaric therapy and other treatments for her son, who is in kindergarten and whose autism she blames on vaccines. She said her son improved greatly in his speech after 20 hyperbaric sessions and has done more than 100 sessions at the half-price rate of $50 at Thoughtful House. Thoughtful House is compiling data on a clinical trial it conducted on hyperbaric oxygen therapy. In his book, Jepson wrote that the theory behind the therapy is that pure oxygen relieves an oxygen deficiency in the tissues, which can help decrease intestinal bacteria and strengthen immune function in autistic children. As with chelation, Jepson wrote that no large, controlled scientific studies have shown that hyperbaric oxygen, antifungals or various diets are effective for treating autism. Instead, he cites anecdotal evidence - the experience of parents and doctors - to support a variety of treatments that lack scientific evidence. Ryland wrote that Thoughtful House staff members " all do our best to work together with the families to help them make informed risk vs. benefit decisions. " The clinic at Thoughtful House is not inspected by state or local health officials. In Texas, small clinics headed by doctors are not regulated except to the extent that a physician must answer to the Texas Medical Board, which investigates complaints against doctors, according to the Department of State Health Services. Neither Krigsman nor Jepson has been disciplined by the board, although both were fined in 2005 for a technical violation: an announcement on the Thoughtful House Web site that the doctors were accepting patients before the board had issued their medical licenses. Outside, independent institutional review boards hired by Thoughtful House to oversee its research trials said they have not received any patient complaints, nor have they visited Thoughtful House. Thoughtful House charges $390 per hour for consultations and follow-up visits and $600 to $1,000 for " initial labs, " according to its Web site. Several parents of Thoughtful House patients said the cost isn't as important as having access to treatments they say can yield life- changing results. Hope with a sizable price tag said she suspects her youngest son became autistic at age 3 from a " toxic soup " of vaccines. That was when he stopped interacting with others and became paranoid and terrified to be out of her sight, said. " He had extreme temper meltdowns, " she said. His immune system was not functioning properly and he would get staph infections on his head that wouldn't heal, she said. He lost his short- term memory. They went to doctors, but " no one could give me answers, " said , who learned of Wakefield's research on the Internet. of New York said she and her husband, s, spent $200,000 the year their son, Christian, was diagnosed with autism at age 2. Christian, now 6, had chronic diarrhea and screamed and drooled constantly. He stopped speaking and rubbed feces on the walls, said , who wrote the foreword to Jepson's book. They sought help from doctors in Boston, Chicago and Cleveland, said, before going to Krigsman for an endoscopy that resulted in a diagnosis of bowel disease. " We spent our life's savings ... until we addressed his underlying gut disease, " she said. Now, under Jepson's care at Thoughtful House, her son is on a special diet and gets chelation in New York. said they rent a hyperbaric chamber for him and he also gets intravenous immunoglobulin therapy, a human blood product that is used to improve immune function, at a cost of $7,000 a month, said. It's covered by insurance because of his diagnosed medical problems, she said. said her son is doing better, and with help from Thoughtful House and a nutritionist who collaborates with the center, she is managing his intestinal disease. Families with incomes below $80,000 a year are eligible for up to $2,000 per year in grants from Thoughtful House. The aid has helped 68 families since July 2006, said Jane , who added that education and therapy for an autistic child ranges from $20,000 to $60,000 a year no matter where the child goes. The center does not accept insurance, but some parents said their health plans have reimbursed them for some procedures. The center's charges don't sound " out of the ballpark " of what's reasonable, Austin pediatrician Ari Brown said, but " I'm leery to send a patient over there. " Brown, a co-author of two books on caring for children, said she's open to new therapies as long as they are based on scientific evidence. Relying on anecdotal evidence is OK, she said, " when it's benign and not costly. But they're really raising the ante with the stuff they're doing. " Dr. Fitzpatrick, a British pediatrician and author, said he is writing a book on unproven autism therapies, including many of the treaments used at Thoughtful House and elsewhere. As the father of an autistic son, he said, it surprises him that parents can be so critical about vaccines yet have " no qualms " about trying experimental therapies on their children. Mainstream medicine has let down parents because it doesn't know what causes autism and doesn't have a cure, said Dr. Offit, chief of infectious diseases at Children's Hospital of Philadelphia and a professor of pediatrics at the University of Pennsylvania. That has left some parents vulnerable to places like Thoughtful House, which, he said, " offer false therapies based on a biological premise that has been disproved. " " The treatment they're offering is expensive, and it's misleading, " added Offit, a Wakefield critic and co-inventor of a vaccine to prevent diarrheal illness. " If this country were better at supervising quackery, places like Thoughtful House wouldn't exist. " To parents who insist that Thoughtful House and Wakefield have made a big difference in their families' lives, such criticisms only make them angry. " It's going to take a lot to convince me, " said Mara LaViola of Frisco, who has a son with autism, " that he's not our hero. " maroser@...; 445-3619 Quote Link to comment Share on other sites More sharing options...
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