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Tuesday, July 26, 2011

Looking for a Cure

The Staten Island Advance reports on Eileen Phoenix, a local woman with an ASD daughter:
Like a growing number of people today, Ms. Phoenix has taken a total natural healing approach toward treating her child: A gluten-free diet. Supplements. Sensory integration. Auditory integration.

After Kasey seemed to have favorable results with craniosacral therapy, a form of massage, Ms. Phoenix went to school to be trained in this technique. What originally began as an effort to save money turned into a career as an acupuncturist with her own practice, Clear Light Acupuncture, in her home.

The mother also tried experimental treatments, many of which are not approved by the United States and cost thousands of dollars.

“I’ve walked into bars at midnight with a coffee can and her picture to try to raise money for her,” she said, noting other people, such as Ms. [Nicole] McDowell, also have helped her stage fund-raisers to pay for these costly procedures.
According to Ms. McDowell, a principal at You and Me School for Children with Autism in Edison, N.J., many parents of autistic kids turn to experimental treatments, “desperate to find anything that might improve their child in the slightest.”

While the Eltingville resident says she “can understand how these families feel about their children and how they’re willing to do almost anything,” as a BCBA, she counsels them against such therapies. Not only are they expensive, she said, but there also is no empirical evidence proving their effectiveness — though, it seems, Kasey did improve after two particular procedures.

Ms. McDowell explains that at age 4 Kasey had plateaued in identifying colors and only was able to determine the difference between red and blue after going to auditory integration therapy.

The second major advance happened when Ms. McDowell accompanied the family on a trip to the Bahamas, where Kasey, then 8, was injected with embryonic stem cells.

After that, she had a giant leap, from speaking one sentence to about 50, and being able to identify kids at her school, which she couldn’t do before.

While Ms. McDowell said she “cannot say the improvement was a direct result” of these therapies, the records she keeps on Kasey do show the girl had a boost in learning afterward.

“But again,” she stressed, “this is not supported by research at all.”
The Sacramento Bee reports on the mother of one boy with ASD and another with epilepsy. She heard about stem cell therapy in Panama:
At one such facility, the Stem Cell Institute in Panama, stem cells from human umbilical cords collected from donors are used to treat autism.

The website promises: Stem cells are capable of regeneration and differentiation, once injected, they can "follow inflammatory signals from damaged tissues and have multiple ways of repairing those damaged areas."

My calls and emails to the institute went unanswered.

There are many unknowns when it comes to stem cell-based therapy and its potential to treat autism, said Dr. Michael Chez, director of Pediatric Neurology at the Sutter Neuroscience Institute in Sacramento.

Stem cell-based therapy is steeped in mystery for the average person, and they tend to think of it as a cure-all, said Chez, who also is Dylan and Devon Le's physician.

"Everybody has stem cells in their body, and as we age, they may be more and more difficult to access," he said.

Stem cells can't just be inserted into the body and magically evolve into a spare part or the thing you need it to become, he said.

"Many things have to happen first before they become able to change," he said.


"A lot of people who are desperate might seek this out in other countries because they're not as regulated as this country is," Chez said.

He anticipates leading a controlled study involving cord blood and autism by the end of the year.

"A controlled study needs to be done looking at patients given essentially a placebo vs. the cord blood, and we are designing such a study," he said. "If anybody were to have done this anywhere, it would add validity to this type of treatment."

In the meantime, parents should be very cautious of offers of autism "cures" that proliferate on the Internet.

"There have always been people trying to offer false hope to people with autism," Chez said. "Unless it's being done in the U.S. or in a medical center in a controlled study or in some type of valid research study, be careful. Going anywhere outside of those environments probably means you're giving your money away without any kind of guaranteed success.

"I understand the desperation, but the Internet is not policed with scientific information."