Stem-cell treatments could also be dangerous. Even though the clinic in Panama, for instance, states on its website that it tests for viruses and bacteria, “until a year ago, nobody would’ve looked for Zika,” DiCicco-Bloom says.
Knowing the risks, Karen Shearer decided to try stem cells anyway. After all, she says, almost nothing has helped her 13-year-old daughter, Skye, who is nonverbal, cannot dress herself and wears a diaper. To cover Skye’s first treatment in Tijuana, Mexico, in 2007, the family cashed in a life-insurance policy; Shearer says it “was probably a scam.” Last year’s $10,000 therapy in Panama, partly funded by a GoFundMe.com campaign, also failed. Then Shearer discovered a clinic in Cancun, Mexico, on Collins’ Facebook group that infuses cells via lumbar puncture, which the clinic says ensures the cells reach the brain. The only improvement Shearer has seen is that Skye is no longer terrified of the swimming pool.
Once she pays off her $11,000 credit card debt from Cancun, Shearer knows what’s next: the Plasticity Brain Centers, which claims to reconnect neural pathways after their proprietary diagnostic technology pinpoints “the exact brain functions that need treatment.” Skye has tried other brain-related treatments, but this one, Shearer says, seems to take a different approach.
At this point, she says, her dream is that her daughter will dress herself and use the toilet. “Skye’s getting older but still functioning like a 2-year-old, and I’m getting more desperate,” she says. “How will I function 10 years from now? How will she?”
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Given the dizzying profusion of alternative treatments, parents can find it a challenge to navigate the options and weigh the risks. A few websites provide parents with the right questions to ask: Does this practitioner or vendor promise miracles that no one else seems to achieve? Is the person promising the outcome also asking me for money? Do I find any scientific research supporting their claims, or are there only individual (often emotional) testimonials?
Many medical professionals may not take the time to talk through the potential risks or flaws of alternative therapies. But Antonio Hardan, a child and adolescent psychiatrist at Stanford University who specializes in autism, makes a point of it. “I’ve been in this field for 15 years, and seemingly every month you have something that people get excited about, and then it dies out,” he says. If whatever the latest is seems unsafe, he cautions against it—“though parents don’t always follow our recommendations,” he notes.
If the treatment seems safe, he helps families figure out how to include it in their schedule and budget, and instructs them to try it for three months, then stop and see what happens. Even with these guidelines, it’s difficult to connect an improvement to an intervention, he says: “You don’t know if it’s the drug or the child’s natural maturity process.”