Claim: ‘Treatment offers ray of hope’

From the Ft. Wayne, Indiana, Journal Gazette:

An untested drug combination created by a Houston area dentist has ignited a controversy over the proper treatment of people with Down syndrome.

Some parents claim their children have shown improvement in behavior and intelligence by using a protocol developed by Teresa Cody, a parent of a child with Down syndrome.

But experts in the field are cautioning parents and medical professionals against using the protocol, which includes regular doses of Prozac, gingko biloba and other materials. The protocol has not been subjected to formal research scrutiny.

A broad coalition of leading groups and scientists has issued a statement saying there is no scientific evidence Cody’s protocol is either safe or effective for people with Down syndrome.

Among those signing the statement are the National Down Syndrome Society, National Down Syndrome Congress, Down Syndrome Research and Treatment Foundation, William C. Mobley, director of Stanford University’s Center for Research and Treatment of Down Syndrome, and David Patterson of the University of Denver’s Eleanor Roosevelt Insitute.

Cody was featured in a documentary, “Changing a Mind.” Her organization is the Changing Minds Foundation.

From Good Morning America/ABC News:

Tiffanie Didonato, who was born with diastrophic dysplasia, a type of dwarfism, said she decided to undergo a controversial and painful bone-lengthening surgery and increase her height by 10 inches so that she could become more independent.

Didonato said she decided to proceed with the surgery after an experience with a teacher when she was 15. “She pulled me in the middle of the classroom, sat me on egg crates and said, ‘I don’t know what kind of disease you have, but obviously you’re a dwarf. Why don’t you tell me what you can and can’t do?’ I’ve never heard the word dwarf be called to me before in my life,” Didonato said.

The interaction was etched in her brain and shortly afterward Didonato decided to adapt to life, since life didn’t adapt to her.

The Little People of America organization doesn’t approve of the surgery because it sends the message that there is something wrong with being a little person.

“Most members of the dwarf community believe that no child should undergo surgery unless it is for a treatable medical condition that will improve her or his health. Limb-lengthing surgery, by contrast, does not address any medical condition,” the group said in a statement to “Good Morning America.”

Didonato’s view, though, is, “I don’t judge you, please don’t judge me.”

Didonato says she is pleased about the results and got married over the past weekend.

(With video.)

From ABC News:

A new billboard by the animal rights group PETA (left) claims a link between cow’s milk and autism, but autism advocates and medical experts questioned the truthfulness and appropriateness of the organization’s message.

The billboard in Newark carries the statement “Studies have shown a link between cow’s milk and autism.”

Dr. Leslie Rubin, director of the autism program at Children’s Health Care of Atlanta, said “there are no studies proving any link between milk and the onset of disease.”

Said Doreen Granpeesheh, executive director of Center for Autism and Related Disorders, “This advertisement gives the impression that drinking milk causes autism, and that is not the case.”

Bruce Friedrich, vice president for PETA, defended the billboard, saying it is intended to inform parents of children with autism that “they very well may see an improvement in their child’s symptoms if they remove dairy.”

(Earlier post here.)

Photo from PETA website.

From the Philadelphia Inquirer:

A growing number of Americans are spending big money on clinics in developing countries that are promising to cure disabilities with stem cells, using techniques that have not been proven safe or effective. Among their targets: Parkinson’s, cerebral palsy and paralysis.

Mainstream researchers condemn the practice as unethical, dangerous and potentially fraudulent, and say such clinics are raking in millions of dollars from vulnerable people. They urge people to wait until research can determine whether the techniques actually work.

But many patients are desperate. “I went to the Dominican Republic expecting a miracle,” Marcela DeVivo, of Valencia, Calif., wrote on her blog, prayfornathan.org. “Will he walk out of the clinic? Maybe he will say his first full, clear word. What will it be?”

DeVivo’s baby son has physical and intellectual disabilities. She paid $30,000 to have him injected with blood stem cells from aborted fetuses.

Editor’s note: Thanks to Nancy Iannone for sending this along!

Associated Press in USA Today:

Spurred by the demands of desperate parents, the head of the National Institute of Mental Health says he supports testing an unproven process on children with autism provided that the tests are safe. Dr. Thomas Insel told the AP that a proposed study has not proceeded because of safety concerns.

Chelation, a process to remove heavy metals from the body, is used to treat lead poisoning but has not been found to be safe and effective in countering autism. Despite the lack of evidence and at least one death, it is estimated that parents are presently subjecting several thousands of children to chelation for autism.

Scientists have said they regard further testing of chelation on children as unethical. Dr. Paul Offit, chief of infectious diseases at the Children’s Hospital of Philadelphia, called on federal research agencies to “bring reason to science” without “catering to a public misperception.”

“Science has been trumped by politics in some ways,” he said.

Related posts:

• Doctors alarmed by availability of OTC chelation agents
• Charges dropped in chelation death of boy with autism

From The New York Times:

Concerns about the side effects of ADHD drugs have prompted the parents of up to two-thirds of children with ADHD to use alternative treatments, such as diet modifications, herbal supplements, biofeedback, massage, and yoga. But research on these treatments is limited, leaving parents in the dark about what options are most safe and effective.

A study released last week found St. John’s Wort to be no more effective at treating ADHD than a placebo; studies of omega-3 fatty acids, found in fish oil supplements, show more promise.

Scientists say it’s difficult to get reliable data on the effectiveness of alternative remedies because they are rarely used alone. Comments are here.

(New York Times graphic)

From the Los Angeles Times:

Doctors are concerned about the broad availability of over-the-counter chelation agents that are being marketed to parents of children with autism. Such products are risky and have not been proven effective, they say.

“This whole chelation therapy craze is one of my pet peeves,” says Hilary Godwin, chair of environmental health sciences at UCLA. “It’s not something you should be doing on your own.”