Since Sam Wessels was diagnosed with
at age 2, doctors have offered his mother a litany of drugs for the boy from Prozac and Ritalin to Metadate CD and Strattera, commonly used to treat ADHD. Other "alternative" medicine pitches have included special diets and even nicotine.
"This is the best you can do?" Sam's mother Lin Wessels wondered.
Wessels, like many parents, has waded through a lot of legitimate — but much more illegitimate — research on therapies in the struggle with autism, which affects 1 in 110 children and has no cure. She eventually came to embrace a drug, Lupron, prescribed by a
doctor who now faces disciplinary action related to his autism treatments.
Beginning Friday, an administrative law judge will hear an appeal from her doctor, Mark Geier, whose license was suspended in April by the Maryland Board of Physicians for putting autistic children at risk. The panel charged Geier, who runs a chain of clinics, with misrepresenting his credentials and misdiagnosing too many autistic children with "precocious," or early, puberty and prescribing Lupron.
The drug is used to treat
in men and fibroids in women, though Geier has said he's given it to hundreds of children for precocious puberty, a rare disorder not generally associated with autism. He declined to comment while his case is pending but said in an opinion piece to The Baltimore Sun that he views the matter as a difference of opinion on research and diagnoses.
"I have spent thousands of hours talking to the families of children with autism — evaluating their condition, publishing research in peer-reviewed journals and trying to add to the medical profession's broad base of knowledge about autism," he wrote. "I understand that not everyone agrees with some of what our research has concluded, just as I don't necessarily agree with what other physicians have written."
The precocious puberty diagnosis adds a wrinkle to the belief perpetuated by small but vocal set of advocates that autism is caused by mercury in
. Geier says precocious puberty results when the mercury exacerbates elevated
in autistic kids.
But the mercury-autism link has been discredited by repeated scientific studies, and Geier's research has been found to lack merit by the Institute of Medicine, the premier advisory commission.
Doctors including Dr. Neal A. Halsey, director of Johns Hopkins' Institute for Vaccine Safety, said parents of children with autism are seeking answers and looking for people who will provide them.
"The evidence is now overwhelming that vaccines don't cause autism," Halsey said. "And there is no scientific evidence to support" the testosterone link.
The board of physicians noted that insurance generally covers the $10,000 monthly cost of the drug for uses approved by the U.S.
, including precocious puberty in children. Wessels' son, Sam, was diagnosed, and despite the scientific evidence and warnings, she joins other parents who still believe it worked and still believe in Geier.
Wessels, who lives in Rock Rapids,
, took Sam to see Geier in his Indianapolis office two years ago. She said there were months of
tests, and then the diagnosis. She began injecting Sam with Lupron daily.
She said the diagnosis made sense to her. Sam was not only having trouble communicating and difficulty learning, but he was tall for his age, had hair on his legs and began constantly masturbating by the time he was 5.
She said there was no "wow" moment where Sam snapped out of his autism, a spectrum of disorders where sufferers lack an ability to communicate and interact properly. But in the course of the next year, Sam's reading improved from 35 words a minute to 85 and he focused in class. He stopped masturbating as much.
Wessels thought Sam was naturally advancing and planned to taper the Lupron at some point — at 9, he had reached the generally accepted age limit for a precocious puberty label.
The day came abruptly four months ago when a nationwide shortage cut off Sam's supply. Wessels said she saw Sam return to his old habits, from flapping his hands, to pacing, to forgetting how to get to his classes.
"I felt like I got a glimpse of the child my son was meant to be, not the one autism gave me," said Wessels, fighting back tears. "It's so sad to watch your child fade away again."
She's now hoping the Lupron supply increases and Geier or another doctor will give her a new prescription.
But a new prescription may be tough. Precocious puberty is rarely diagnosed,
and medical experts have said that treating it is generally only done for social reasons or to ensure children achieve a normal height.
There is no scientific basis for Geier's Lupron protocol, said Dr. Paul Kaplowitz, a pediatric endocrinologist at Children's National Medical Center in
who has written and spoken extensively on precocious puberty.
Kaplowitz said he's reviewed Geier's research and was asked several years ago to review the charts of some of his other patients. He concluded those children did not have precocious puberty and that Lupron wouldn't help them. He said many autistic kids exhibit behaviors such as masturbating, and Lupron isn't a treatment for
"Dr. Geier has a very loose and sloppy definition of what is precocious puberty," Kaplowitz said. "Precocious puberty is much less often diagnosed in boys than in girls, and when it is present, one sees growth of the
and testes as well as pubic hair as well as specific changes in hormone levels. A little bit of body hair, some aggressive behavior and a borderline elevated testosterone is not precocious puberty."
Geier claims that Lupron
works by lowering elevated testosterone levels in autistic kids, but few if any of his patients have elevated testosterone measured in a reliable laboratory, Kaplowitz said.
Kaplowitz said there have been other claims by doctors and parents of benefits from a variety of treatments for autism, including Secretin, a hormone causing release of digestive juices. However, a controlled trial published in 1999 showed it was no better than a
He and Halsey couldn't explain improvements some parents claim from Lupron, other than that the children progressed normally or that the placebo effect was strong. But they agreed there was no scientific foundation for doing a study of Lupron as a treatment for autism.
"I don't mean to belittle the parents' concerns or beliefs," said Halsey. "But people have sold mineral water for all kind of illnesses, and people — educated people like these parents — become absolutely convinced it helped when it couldn't have."
One of those still convinced Lupron works is Lisa Sykes, an associate pastor at Welborne United Methodist Church in Richmond, Va. She doesn't have much faith in mainstream medicine anymore and said she has all the anecdotal evidence about the drug she needs.
Her son, Wesley, was diagnosed with autism at age 2. When he was 4, she saw a doctor who performed a "chelation challenge," the controversial use of a binding agent to test for mercury in urine, and was told his levels were "off the charts."
She began advocating for the removal of mercury that remains in some vaccines and came to know the Geiers. And when she said Wesley began masturbating and growing leg hair at 8, he was diagnosed with precocious puberty and put on Lupron injections.
She said he became less hyperactive, more affectionate and better able to learn, though he still can't speak. His masturbating declined.
Now 14, he's gone off Lupron, but she said he's still taking another oral drug to lower his testosterone because she believes it helps control his behavior.
"One day, Lupron will be the standard of care for mercury-induced autism," Sykes predicted.
But Kaplowitz says there is no chance it will become a standard treatment for autism.
"Parents often believe a drug works for their child because they're told it will," Kaplowitz said. "There just no plausible reason Lupron would work in the patients that Dr. Geier has treated."