01-18-2006, 11:04 AM
Doctors question benefit of hyperbaric oxygen therapy for autistic children
By JESSICA ADLER
North Jersey HERALD NEWS
Tuesday, January 17, 2006
To Andrew Piccirillo, the hyperbaric oxygen chamber seems like a spaceship. To his parents, the see-through, bed-sized capsule at Paterson's Barnert Hospital seems like a new bit of hope.
Hyperbaric oxygen therapy (HBOT), which exposes a patient to increased atmospheric pressure and 100 percent oxygen-filled air (as opposed to the 20 percent we breathe in the environment), is typically used for people with chronic wounds, infections or gas poisonings. Most recently, HBOT made headlines when it was used to treat a West Virginia coal miner who suffered carbon monoxide poisoning.
Andrew, who is 10 years old, is autistic. His parents are giving HBOT a try – even though no studies have been done on the effectiveness of HBOT in treating autism; even though insurance doesn't cover the 90-minute, $200 HBOT "dives" for the treatment of autism; even though virtually every doctor who doesn't make money administering the treatment to autistic children is skeptical about using it for such patients.
"This happens often in the autism world -- something comes out and parents flock to it," said Paul A. Potito, executive director for the Center for Outreach and Services for the Autism Community (COSAC). "Parents are willing to try lots of things because the disease is so devastating."
The Piccirillos aren't blind to that phenomenon. Like other families battling autism, a cognitive disorder that impairs social and learning abilities to varying degrees, the Piccirillos face the daily reality of an emotionally and, at times, physically exhausting illness. They will, they say, try almost anything to make it better. That includes treatments -- chelation therapy, which allows for the release of heavy metal in a patient's urine and hormone treatment with Secretin -- viewed with great skepticism by the mainstream medical community.
"When you're faced with a disability like autism, where there is no F.D.A.-approved treatment for it; you're faced with trying all different things you think might work," says Andy Piccirillo, Andrew's dad. "I don't think (HBOT) is the cure, but I think everything we've done collectively has brought Andrew from a non-verbal state to being a kid that goes to school and participates in the classroom and is learning and has friends."
The Piccirillos heard about HBOT from a friend, another parent of an autistic child. It had done wonders for her 7-year-old son, she told them. After almost 40 HBOT sessions, the mother said, he was making more eye contact. His concentration had improved. His temper was better.
On Web sites for parents of autistic children, Piccirillo found similar accounts. At http://www.healing-arts.org, a Web site advocating holistic medicine, he found a study purporting to show that HBOT had effectively treated childhood encephalitis, or swelling of the brain: "Viral encephalitis," it said, "presents a model for the inflammation that may be part of autism."
But, many doctors warn, it's not a good idea to rely on "may be's."
"If there is a treatment for autism, the approach would probably depend on the underlying problem, and we don't know what the cause of autism is," said Dr. Jonathan Mink, associate professor of neurology and pediatrics and chief of child neurology at the University of Rochester. "There is little or no evidence that hyperbaric oxygen is helpful for established brain injury."
His skepticism is widely echoed.
"As far as what exactly it does in brain, based on everything we know about autism, I do not believe (HBOT) could possibly help," said Dr. Leonid Topper, a pediatric neurologist with Pediatric Neurology Associates in Morristown.
"It's like the old tonics out west that were good for rheumatoid arthritis, the liver and the kidney," said Ronald Jacobson, an associate clinical professor of neurology and pediatrics at New York Medical College and a pediatric neurologist with Pediatric Neurological Associates in Englewood. "When a treatment is proposed to be good for many, many conditions, people should be wary."
While doctors are skeptical of HBOT and point out that it can cause seizures and oxygen toxicity in a limited number of patients, most are mindful of the plight parents of autistic children face. Although he doesn't recommend HBOT, Jacobsen says, "I'm very sympathetic to patients trying anything, because there are not a lot of treatments that work."
While researching HBOT, Andy Piccirillo read accounts from those offering the therapy that boasted of its potential.
"Think of it like a charge not firing," said Geoffrey Saft, a chiropractor who administers HBOT to about three autistic children per day in his Corte Madera, Calif., office. "What we believe happens in hyperbaric therapy -- in the brain and nervous system -- is that it causes idle synapses that are not working right, to get going again."
Saft charges $80 per session, relatively little compared to the $100 to $900 charged at the approximately 300 centers offering hyperbaric therapy around the country. The more treatments a patient has, the more lasting its effects, Saft maintains, adding that those effects can include increased attention span and improved socialization. Eighty percent of his autistic patients, he says, experience some improvement.
"His language skills jumped -- really jumped -- and he's picking up more phrases and vocabulary," said Nancy, the parent who originally referred the Piccirillos to HBOT, of her son's improvement following more than 40 intermittent sessions. Nancy, who lives in didn't want her last name printed, since her son is so high-functioning that some don't know of his diagnosis, she said.
But skeptical doctors such as Mink call experiences like Nancy's "the placebo effect."
"We all know that a good expectation leads to a temporary perception of improvement," Mink said.
Piccirillo is used to such skepticism. Even though he knows HBOT isn't scientifically proven to be effective, Nancy's account provides hope.
"We have to be realistic judges of each therapy on our own," he said. "There is nothing proven, but if one out of 10 kids benefit from it, that's a good thing."
When the Piccarillos found out that HBOT was available 10 minutes from their Wayne home, at Barnert Hospital, they signed Andrew up for 10 sessions over two weeks. Last week, the little boy burst into the hospital room full of energy, carrying a DVD of "Buzz Lightyear," one of his favorites, and repeatedly quoting memorized excerpts of the book "The Three Little Pigs."
The redundant speech patterns and hyperactivity are two behaviors the Piccirillos hope will be helped by the HBOT.
When it was finally time to get into the oxygen chamber, "the magic schoolbus," as Andrew calls it, the boy laid calmly as he watched his movie.
At this point, Andrew is about halfway through his morning sessions, which will cost a total of $2,000 -- $150 per "dive," plus a $50 doctor's fee. The Piccirillos remain hopeful that they'll see some of the improvement described by their friend Nancy. If they notice any positive changes in Andrew's behavior, they'll continue the treatments in spurts.
Andy Piccirillo, an accountant, and his wife, a teacher, believe their insurance company will reverse its decision not to cover the HBOT for their son. Even if they have to pay out of pocket, though, they say they'll find a way to fund any treatment they think works, including HBOT.
"As parents, you do anything you can to make your child's life better," Piccirillo said. "We won't give up on him."
Reach Jessica Adler at (973) 569-7169 or adler@northjersey.com
Michael Karas/Herald News
Andrew Piccirillo, 10, talks with his dad, Andy, during a "dive" in the hyperbaric oxygen chamber. Though many doctors question its effectiveness, for parents of autistic children, the chance it might help makes the treatment worth its high cost.
Source: http://www.northjersey.com/page.php?qstr...FlZUVFeXkz
By JESSICA ADLER
North Jersey HERALD NEWS
Tuesday, January 17, 2006
To Andrew Piccirillo, the hyperbaric oxygen chamber seems like a spaceship. To his parents, the see-through, bed-sized capsule at Paterson's Barnert Hospital seems like a new bit of hope.
Hyperbaric oxygen therapy (HBOT), which exposes a patient to increased atmospheric pressure and 100 percent oxygen-filled air (as opposed to the 20 percent we breathe in the environment), is typically used for people with chronic wounds, infections or gas poisonings. Most recently, HBOT made headlines when it was used to treat a West Virginia coal miner who suffered carbon monoxide poisoning.
Andrew, who is 10 years old, is autistic. His parents are giving HBOT a try – even though no studies have been done on the effectiveness of HBOT in treating autism; even though insurance doesn't cover the 90-minute, $200 HBOT "dives" for the treatment of autism; even though virtually every doctor who doesn't make money administering the treatment to autistic children is skeptical about using it for such patients.
"This happens often in the autism world -- something comes out and parents flock to it," said Paul A. Potito, executive director for the Center for Outreach and Services for the Autism Community (COSAC). "Parents are willing to try lots of things because the disease is so devastating."
The Piccirillos aren't blind to that phenomenon. Like other families battling autism, a cognitive disorder that impairs social and learning abilities to varying degrees, the Piccirillos face the daily reality of an emotionally and, at times, physically exhausting illness. They will, they say, try almost anything to make it better. That includes treatments -- chelation therapy, which allows for the release of heavy metal in a patient's urine and hormone treatment with Secretin -- viewed with great skepticism by the mainstream medical community.
"When you're faced with a disability like autism, where there is no F.D.A.-approved treatment for it; you're faced with trying all different things you think might work," says Andy Piccirillo, Andrew's dad. "I don't think (HBOT) is the cure, but I think everything we've done collectively has brought Andrew from a non-verbal state to being a kid that goes to school and participates in the classroom and is learning and has friends."
The Piccirillos heard about HBOT from a friend, another parent of an autistic child. It had done wonders for her 7-year-old son, she told them. After almost 40 HBOT sessions, the mother said, he was making more eye contact. His concentration had improved. His temper was better.
On Web sites for parents of autistic children, Piccirillo found similar accounts. At http://www.healing-arts.org, a Web site advocating holistic medicine, he found a study purporting to show that HBOT had effectively treated childhood encephalitis, or swelling of the brain: "Viral encephalitis," it said, "presents a model for the inflammation that may be part of autism."
But, many doctors warn, it's not a good idea to rely on "may be's."
"If there is a treatment for autism, the approach would probably depend on the underlying problem, and we don't know what the cause of autism is," said Dr. Jonathan Mink, associate professor of neurology and pediatrics and chief of child neurology at the University of Rochester. "There is little or no evidence that hyperbaric oxygen is helpful for established brain injury."
His skepticism is widely echoed.
"As far as what exactly it does in brain, based on everything we know about autism, I do not believe (HBOT) could possibly help," said Dr. Leonid Topper, a pediatric neurologist with Pediatric Neurology Associates in Morristown.
"It's like the old tonics out west that were good for rheumatoid arthritis, the liver and the kidney," said Ronald Jacobson, an associate clinical professor of neurology and pediatrics at New York Medical College and a pediatric neurologist with Pediatric Neurological Associates in Englewood. "When a treatment is proposed to be good for many, many conditions, people should be wary."
While doctors are skeptical of HBOT and point out that it can cause seizures and oxygen toxicity in a limited number of patients, most are mindful of the plight parents of autistic children face. Although he doesn't recommend HBOT, Jacobsen says, "I'm very sympathetic to patients trying anything, because there are not a lot of treatments that work."
While researching HBOT, Andy Piccirillo read accounts from those offering the therapy that boasted of its potential.
"Think of it like a charge not firing," said Geoffrey Saft, a chiropractor who administers HBOT to about three autistic children per day in his Corte Madera, Calif., office. "What we believe happens in hyperbaric therapy -- in the brain and nervous system -- is that it causes idle synapses that are not working right, to get going again."
Saft charges $80 per session, relatively little compared to the $100 to $900 charged at the approximately 300 centers offering hyperbaric therapy around the country. The more treatments a patient has, the more lasting its effects, Saft maintains, adding that those effects can include increased attention span and improved socialization. Eighty percent of his autistic patients, he says, experience some improvement.
"His language skills jumped -- really jumped -- and he's picking up more phrases and vocabulary," said Nancy, the parent who originally referred the Piccirillos to HBOT, of her son's improvement following more than 40 intermittent sessions. Nancy, who lives in didn't want her last name printed, since her son is so high-functioning that some don't know of his diagnosis, she said.
But skeptical doctors such as Mink call experiences like Nancy's "the placebo effect."
"We all know that a good expectation leads to a temporary perception of improvement," Mink said.
Piccirillo is used to such skepticism. Even though he knows HBOT isn't scientifically proven to be effective, Nancy's account provides hope.
"We have to be realistic judges of each therapy on our own," he said. "There is nothing proven, but if one out of 10 kids benefit from it, that's a good thing."
When the Piccarillos found out that HBOT was available 10 minutes from their Wayne home, at Barnert Hospital, they signed Andrew up for 10 sessions over two weeks. Last week, the little boy burst into the hospital room full of energy, carrying a DVD of "Buzz Lightyear," one of his favorites, and repeatedly quoting memorized excerpts of the book "The Three Little Pigs."
The redundant speech patterns and hyperactivity are two behaviors the Piccirillos hope will be helped by the HBOT.
When it was finally time to get into the oxygen chamber, "the magic schoolbus," as Andrew calls it, the boy laid calmly as he watched his movie.
At this point, Andrew is about halfway through his morning sessions, which will cost a total of $2,000 -- $150 per "dive," plus a $50 doctor's fee. The Piccirillos remain hopeful that they'll see some of the improvement described by their friend Nancy. If they notice any positive changes in Andrew's behavior, they'll continue the treatments in spurts.
Andy Piccirillo, an accountant, and his wife, a teacher, believe their insurance company will reverse its decision not to cover the HBOT for their son. Even if they have to pay out of pocket, though, they say they'll find a way to fund any treatment they think works, including HBOT.
"As parents, you do anything you can to make your child's life better," Piccirillo said. "We won't give up on him."
Reach Jessica Adler at (973) 569-7169 or adler@northjersey.com
Michael Karas/Herald News
Andrew Piccirillo, 10, talks with his dad, Andy, during a "dive" in the hyperbaric oxygen chamber. Though many doctors question its effectiveness, for parents of autistic children, the chance it might help makes the treatment worth its high cost.
Source: http://www.northjersey.com/page.php?qstr...FlZUVFeXkz
