Parents turn to long-shot therapy for autism

Discussion in 'General Parenting' started by Sheila, Apr 24, 2007.

  1. Sheila

    Sheila Moderator

    Quote: "The bottom line," Wong said, "is that when you are the parent of an autistic child, you learn to appreciate the treatments that yield even subtle changes."

    So true.

    I don't know whether this therapy has any benefit or not, but I find it interesting how mainstream health care scoffs at trying something outside of mainstream. Particularly when so many effective treatments were discovered by accident.

    Parents turn to long-shot therapy for autism

    By Kirsten Scharnberg
    Tribune national correspondent
    Published April 23, 2007, 7:48 PM CDT

    HONOLULU -- Kalma Wong has tried almost everything for her two autistic children: special diets, intense behavioral therapies, flying in experts from the U.S. mainland at exorbitant costs.

    Some efforts have yielded modest success. Others have done next to nothing.

    But like many other parents of the more than 500,000 children that the Centers for Disease Control estimates to be autistic in the U.S., Wong has vowed to keep trying until she pinpoints the treatment that most helps her kids.

    Her latest attempt is one of the most long-shot therapies yet, a protocol some doctors praise but that others declare to be a waste of time that gives desperate parents false hope and exploits them financially.

    It is called hyperbaric oxygen therapy, a treatment in which pure oxygen is delivered to patients confined to pressurized chambers for an hour a day for several weeks. The theory is that the extreme doses of oxygen essentially the same kind of treatment that has been used for decades to cure divers with decompression illness will spur dormant or damaged neurons in the brain to become reinvigorated or even transformed.

    In the case of children with autism, considered the fastest-growing developmental disability in the U.S. today, the new treatment is claimed to have produced some stunning results: transforming non-verbal children into fluent speakers; helping children hypersensitive to outside stimuli become calm enough to attend public schools; changing kids once adverse to any personal interaction or touching into affectionate toddlers.

    "I don't know what to expect from this," Wong said, "but the minute I heard about the upcoming trial, I called and got my kids on the list. I feel like it's worth a shot."

    Her reaction is just what some autism experts fear.

    "I understand that what all parents want is to be able to look back and say they did everything they possibly could to help their child," said Dr. Tina Iyama, professor of pediatrics at the University of Wisconsin-Madison and an expert on autism. "That's why they are trying all these experimental new treatments. But … there is absolutely no reason to think that improving oxygen levels in a child with autism will be helpful."

    The debate over hyperbaric oxygen therapy, or HBOT, well illustrates the fault lines over autism, a disorder that the Centers for Disease Control and Prevention estimates afflicts as many as 1 in every 150 children in America. Because there is no medical consensus on what causes autism, there also is little agreement on how best to treat it.

    Some doctors who believe that the components of childhood vaccines – such as mercury – have been responsible for many cases of autism advocate detoxification programs in which children take chemicals that bind with metals in the body and force them out through urine. Others promote gluten-free diets under the theory that autistic children have high levels of a certain type of yeast in their digestive tracts. And then there are the proponents of HBOT, which has gained a following among parents who claim it has helped improve children with neurological problems, including cerebral palsy, traumatic brain injury, encephalitis and, most recently, autism.

    Inside an office in an industrial section of Honolulu is the Hyperbaric Medicine Center. The first stop on the tour by Dr. Maryellen Markley, the facility's patient care coordinator, is in front of two color brain scans which she said show the profound results of HBOT. The first scan, she says, reveals that the autistic child scanned had decreased blood flow and profound neuroinflamation before the oxygen therapy.

    "Look at how much has changed in the second scan," Markley said, pointing. "Better blood flow, less inflammation, more connections between the two sides of the brain. This child, a 6-year-old, was completely non-verbal since the age of one and a half, and after 66 hours of hyperbaric oxygen therapy was talking again."

    Markley said she has treated more than 30 autistic children with HBOT and "every single child of those 33 had consistent quality-of-life improvements." The improvements, she said, were more pronounced in kids most afflicted by the characteristics of autism: the repetitive behaviors and the impairments in sensory perception, social interaction and communication.

    Critics argue that no studies have been done that use scientific models such a double-blind testing. They caution that the treatment has been tried only on a handful of children affected with autism nationwide, not nearly enough to draw valid conclusions.

    "They are making extraordinary claims without extraordinary evidence," Iyama said.

    Evidence is exactly what supporters of HBOT are hoping to get in the coming months. Beginning in May, the Honolulu clinic, along with some 20 hyperbaric oxygen clinics across the U.S., will launch a formal study into how autistic children respond to the therapy. A total of about 400 children will be included, and the results are to be evaluated by the National Institutes for Health.

    Other studies are under way that HBOT proponents are closely watching. One of the biggest is a federally funded study on the effects of HBOT on children with cerebral palsy that is under way at Wright-Patterson Air Force Base in Dayton, Ohio.

    One group watching the outcomes of these studies is the Undersea and Hyperbaric Medical Society, a non-profit group of doctors that investigates scientific claims linked to HBOT. Thus far the group has been skeptical of using HBOT to help neurological conditions such as autism or cerebral palsy.

    "If we just had the evidence we'd be happy to support it. But it just isn't there," Dr. Donald Chandler, executive director of the UHMS, has said in statements regarding the therapy.

    As unproven as HBOT is for treating autism, it is widely accepted in other fields of medicine. It has been used for decades to successfully treat other medical ailments and is so well-documented to work in the treatment of slow-healing wounds, burns, carbon monoxide poisoning, intercranial abscesses, gangrene and the stubborn sores associated with diabetes that many insurance companies include HBOT in their list of reimbursable medical expenses.

    One insurance reimbursement case, in Georgia, is pointed to most frequently by supporters of HBOT. The case involved Jimmy Freels, a child with such severe cerebral palsy, a neological disorder that affects body movement and muscle coordination, that he was essentially a quadriplegic. With HBOT, the boy improved to such a degree that he could speak, swim, attend public school and play wheelchair football, according to court testimony. In court, brain scans similar to those Markley shows of autism patients who have undergone HBOT showed significant improvement in Jimmy's brain blood flow and metabolism in portions the brain.

    A state judge ordered Georgia Medicaid to cover HBOT for Jimmy, saying the evidence had showed the therapy had helped.

    The treatment is far from cheap. HBOT can range from about $180 to $800 per hour.

    The therapy is not alleged by most of its critics to be dangerous. It carries, they say, a rare risk of prompting seizures, but most seem to believe it is simply a waste of time and money.

    "My fear is that we're going to waste tax dollars and good time and money chasing quirky ideas," said Iyama, who heads an autism clinic in Madison. "The only effective treatment for autism is educational and behavioral treatment The rest is just wishful thinking."

    Major medical groups have backed this sentiment. The American Academy of Pediatrics several years ago issued a statement dismissing most alternative-medicine treatments for autism.

    Indeed, HBOT has a history of being oversold as something of a cure-all. The most notorious case came in the 1920s. A doctor in Cleveland built a compression chamber where long lines of patients went in hopes of curing everything from syphilis to cancer. When the treatment failed, the chamber was torn down and sold for scrap metal.

    Iyama fears that parents deeply saddened and frustrated by their children's condition will make bad decisions about experimental therapies. She stressed that the most accepted method for treating autistic children is the kind of intensive behavior therapy that requires at least 35 hours of work each week with an autistic child. She fears that some parents are drawn to treatments that promise faster results.

    "I had one mother who told me her mom was willing to mortgage the family home in order to fund hyperbaric oxygen therapy for the child," Iyama said.

    Wong, whose two children will begin HBOT in May, is not putting her hopes on any one thing. She continues to immerse her children in behavioral therapies, to work with national autism educational experts and adhere to a rigorous gluten-free diet..

    "The bottom line," Wong said, "is that when you are the parent of an autistic child, you learn to appreciate the treatments that yield even subtle changes."
     
  2. Marguerite

    Marguerite Active Member

    There may be something in this HBOT or there may not. Certainly, work needs to be done. It sounds like it is going to happen - definitely watch this space. To 'sell' it before the jury is out, is cruel. Mind you, this article is not trying to sell it in any way - it is urging caution in just these circumstances.

    It is sad when we get 'sold' such a range of 'information' which many of us simply are not equipped to evaluate impartially, especially since it's OUR kids this is going to relate to. Not only autism - work I've done with other disabilities has shown me how unscrupulous some researchers are; how genuine but how unscientific others can be; and how even the good researchers get it wrong more often than not. What I did learn - never believe anyone who PROMISES a cure, unless there is sufficient, independently-verified peer-reviewed scientific publication to back it up. A quote in the popular press does not qualify - in fact, it often disqualifies the work from ever being considered scientific. All genuine researchers know this and only publish in the popular media once peer-reviewed journals have done their professional job.

    But too often, I've seen 'researchers' go to the popular media first, crying 'foul' that the mainstream scientific community is so jealous of their work that they have been frozen out of scientific publication. Never so. Science thrives on trying to prove other scientists wrong - publicly and scientifically. There are no ranks to close. Those with a chip on their shoulder that they cannot be published out of jealousy - I've seen many of these and it was incompetent work, not jealousy. But I've seen many members of the public sucked in by these people and ripped off emotionally and financially. Some of these 'scientists' really believe in what they are doing - they still do as much damage as the charlatans.

    Be afraid. Be very afraid. And become a scientist, at least where your own child's welfare is at stake.

    Marg
     
  3. Fran

    Fran Former Site Owner

    <span style='font-size: 11pt'>been there done that. Not this particular therapy but I watch constantly for something that will work to increase the ability of difficult child to live a full life. I'm pretty skeptical so I don't tend to jump into treatments that don't make sense to me. I will and have done everything that I can think of to help difficult child.
    It's unfortunate that some of the stuff is useless but how do we know unless we try it. It's the thieves who try to get rich by using the fear, parents have for their children that should be tarred and feathered. If it's too good to be true, it probably isn't.
    I'll watch this and several other treatment possiblities. If it won't hurt the child, then I'm more willing to try. Now difficult child has a say in his treatment and he has the right to say yes or no. My biggest fear is that something will hurt my child. </span>
     
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