Unable to watch the seizures continue to wrack their daughter’s tiny body, Ann Marie Angelucci said she and her husband were willing to try anything — and pay anything — to help their child diagnosed with autism.
On the advice of other parents, they took Carolyn to a doctor for hyperbaric oxygen treatments, which cost $90 each and required their 5-year-old to lie repeatedly in a pressurized chamber flooded with oxygen.
They also paid $15,000 to install a chamber in their Yardley, Pa., home. Six months later, with no sense the treatment was helping, the Angeluccis sold the device on eBay for about half the price they paid.
"I cannot say one way or another if it helped her. There was no measurable effect," said Angelucci, a nurse and central New Jersey native. "But I wouldn’t tell a family not to do it, because you never know. You’ll grasp at anything that might help."
Come January, the state health department will decide for the first time whether a hospital — Meadowlands Hospital Medical Center in Secaucus — should be allowed to offer this experimental and controversial treatment for children with autism.
Judging from the sentiments on both sides of the issue, there is a lot at stake. Traditional medical experts say hyperbaric treatment offers families false hope while draining their bank accounts because insurance doesn’t cover it. Advocates say the approach deserves more respect and attention by researchers because some families swear it has helped their children communicate and learn.
If the state licenses the hospital’s hyperbaric chambers for experimental use, the work would be overseen by Philip DeFina, who has a doctorate in clinical psychology from an accredited online university. His work with neurologist Jonathan Fellus treating coma and brain-injured patients commands $100,000 a year in out-of-pocket costs from hopeful families across the country, according to the two doctors.
Should the state give its approval, the statewide advocacy group Autism New Jersey won’t recommend it.
"There might be some anecdotes, and they are a nice start to develop a hypothesis, but they in no way substantiate claims of efficacy," said Suzanne Buchanan, clinical director for Autism New Jersey. She suggests families explore the evidence-supported applied behavioral analysis, which requires a child to break down desired actions into smaller steps that are repeated.
Buchanan also recommends "hopeful skepticism" with anything deemed experimental.
"You have to explore things that could make a positive difference," she said, "but if you are not skeptical, you could be led down the wrong path."
More @ http://www.nj.com/news/index.ssf/2011/11/questions_risks_surround_hyper.html
No comments:
Post a Comment