"This is the best you can do?" Sam's mother Lin Wessels wondered.
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 prostate cancer 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 vaccines. Geier says precocious puberty results when the mercury exacerbates elevated testosterone 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. Food and Drug Administration, 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, Iowa, took Sam to see Geier in his Indianapolis office two years ago. She said there were months of genetic and hormone 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.