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A custody battle over the science of autism
• Many physicians warn against the treatment a father approved, but a local
court backs him
By Betsy Q. Cliff / The Bulletin
Published: November 27. 2011 4:00AM PST
Suzy Combs went along with the treatment plan for her
son Victor Probert in the beginning.
Indeed, she was desperate to do anything to help the
autistic boy live a more normal life.
But as time went on, she became increasingly doubtful the
multiple supplements, prescription drugs and intravenous
treatments benefited him.
In doing research, she realized many of her concerns
were supported by medical research, which suggested
Victor’s regimen likely did no good and perhaps could
cause harm.
Yet, unlike most parents who might simply change
physicians, Combs has been court-ordered to follow the
treatment plan she disagrees with.
Courtesy Suzy Combs
Victor Probert, a 16-year-old who once lived in Central
Oregon, is autistic. But his parents have fought over the
best medical treatment for him.
Combs is divorced from Victor’s father, Randy Probert.
Probert has full custody of Victor, which allows him to
make medical decisions for the boy.
Probert said he believes in Victor’s regimen.
The Deschutes County case illustrates the complex
interplay of medical science and the legal system. While
mainstream medicine favors Combs, experts said legal
standards made it unlikely she would win custody or keep
her son from his current treatment.
Autism is a serious developmental disorder that affects a
child’s brain in the early years of life. An estimated one in
110 children in the United States develops the disorder,
characterized by difficulties with social and communication
skills. Its exact causes are unknown, and no single
treatment has been proved to work best.
Courtesy Suzy Combs
Victor Probert, a 16-year-old who once lived in Central
Oregon, is autistic. But his parents have fought over the
best medical treatment for him.
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Still, doctors around the country have criticized the type of treatment Victor is receiving. Dr. Kyle Steinman, medical
director of the University of Washington’s Autism Center who was not involved in the case but was told about it by a
reporter, called the order compelling Combs to follow that treatment “horrible.”
“For a mom to be ordered to do treatments that are not based in scientific evidence and that many doctors would say are
inappropriate or dangerous” seems wrong, Steinman said.
Family law experts, however, said judges consider a number of factors in cases involving child custody and family law.
Because Combs brought up her concerns in an effort to modify the existing order giving Probert custody, her burden of
proof was much higher than it may have been otherwise, experts said.
“For the purposes of modification, there generally has to be a significant change in circumstances. Courts don’t modify
just because (one parent believes) ‘I can do something better,’ ” said Leslie Harris, a family law professor at the University
of Oregon.
A theoretical danger may not be enough, particularly for a modification, she said. “Some judges say I really need to see
that there is harm to the child before I’m going to change custody.”
In this case, Deschutes County Circuit Judge Stephen Tiktin, who adjudicated the case, said in an opinion he did not find
evidence of harm that would compel him to modify the order. Tiktin said he had considered both sides and found “no
showing that Victor does not continue to improve or that he is harmed in any way” by his physician’s care.
Tiktin declined to comment further on the case, he said through his judicial assistant, Mathew Farlow.
Combs said she is now concerned for her son’s health. She continues to take steps to try to halt Victor’s treatment,
including filing multiple complaints against his physician with the Oregon Medical Board.
“It’s a mess,” Combs said. “It boggles my mind” that Tiktin did not find evidence of harm.
Probert, on the other hand, lauded Victor’s physician, Dr. John Green, who has an independent clinic in Oregon City. “I
believe in the man so much,” he said. “He’s so compassionate. ... He’s all about helping these kids.”
The divorce
Combs and Probert filed for divorce in 2003, and Tiktin had the case from the beginning. Combs was living in Redmond at
the time and Probert in Powell Butte, according to court documents. They were granted joint custody of their two sons,
Victor, who is now 16, and his brother, 17.
Around the time of the divorce, according to court documents, both Combs and Probert started bringing Victor to see
Green. They agreed on the treatment for him then, Combs said. In a note filed in court, Green praises the two for working
together despite their divorce.
The divorce got ugly quickly. Each side accused the other of intimidation and abuse, according to court documents. Both
filed for sole custody of the boys.
At that time, around 2007, the treatment for Victor was still unquestioned by his parents. In fact, each parent used
adherence to Green’s regimen as evidence of being the better parent.
In 2008, Probert was awarded custody of both boys, though Combs saw them regularly. Later that year, Probert notified
the court that he lost his job and had begun to look for work out of the area.
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In 2010, Probert found a job in Kennewick, Wash. Even with custody, he had to get permission from the court to move the
boys. The older son at this point had stopped spending time with his father, and Probert petitioned to take only Victor with
him.
“Randy is an extremely involved father,” said Linda Reed Haase, Probert’s lawyer. “He was the one who understood the
treatment better and who was better able to follow through with what treatments were ordered.”
Green testified at three hearings during the case and recommended Probert have custody, Haase said. It was in large
part because of that support that Probert was granted it, she said.
Combs said she started to grow skeptical of Green’s treatments a couple of years ago, about the time Probert petitioned
to take Victor to Kennewick. She didn’t like the numerous nutritional supplements Victor was taking and wanted to back
off. For example, she said, Green was recently giving the boy between 2,000 and 3,000 milligrams of vitamin C per day,
which Combs said caused Victor to have diarrhea, a potential side effect of too much of the vitamin, according to the
National Institutes of Health.
The recommended daily intake for a boy of Victor’s age, according to the federal government, is between 63 and 75
milligrams per day.
She said she brought up her concerns in court. At this time, having run out of money, she was representing herself. She
did not have an expert on her behalf or any outside support for her contention that Green’s treatment was not the best.
That can be a huge issue, said Krystal Callaway Jaime, the supervising attorney for the family protection clinic at the
University of California, Davis, School of Law.
To question a medical treatment, she said, “you are going to have to come in with a highly qualified medical expert ... and
you are going to have to hire someone.”
Typically, “that is going to be exorbitantly expensive,” Jaime said, but important. “That can make or break a case.”
According to court documents, Probert argued he was a more conscientious parent when it came to following treatment
protocols. He also argued Kennewick had more resources than Central Oregon for children with developmental disorders.
He was successful. Victor moved to Kennewick in summer 2010 and kept seeing Green.
With Victor under Green’s care, Probert said, he’s seen “tremendous” improvement. “We look forward to things now that
we wouldn’t have been able to do without Dr. Green.” He cited the example of Victor’s now being able to make pancakes
and clean up after himself.
Unproven methods
Green is the only medical physician in Oregon listed as a clinician on the website of the Autism Research Institute, though
there are a few Oregon naturopathic or chiropractic physicians also listed on the site. According to the website, physicians
on the list have asked to be put there.
The Autism Research Institute supports looking at environmental factors that may cause or exacerbate autism, a goal
many find laudable. Their way of approaching autism treatment is commonly referred to as DAN!, after the work done by
some physicians became known as Defeat Autism Now!
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It has many supporters, both within the medical community and among parents of autistic children. Most notable, perhaps,
is model Jenny McCarthy, who wrote a book about her experience.
But some clinicians associated with the group use treatments that many medical physicians find at best benign and at
worst harmful.
That protocol “is based on theories concerning autism that are either entirely speculative or rely on ‘scientific data’ that
has been entirely discredited,” Dr. Robert Rust, a professor of neurology and pediatrics at the University of Virginia, wrote
in an email to Combs.
Dr. Bob Nickel, a developmental pediatrician at Oregon Health & Science University and member of the Oregon
Commission on Autism Spectrum Disorder, agreed with Rust. Many of the therapies suggested to families, he said, come
from anecdotal reports.
That may suggest an approach, Nickel said, but does not prove its validity. “You need to do the science. You need to do
the clinical trials. And that’s what’s been missing in the alternative therapies.”
For example, physician notes submitted to the court show Victor has taken gentamicin, an antibiotic. Typically, antibiotics
are used to treat bacterial infections.
Though he declined to comment on the Probert case directly, citing patient privacy laws, Green said in an interview he
uses antibiotics to treat an overgrowth of harmful bacteria sometimes found in the gut of an autistic child.
Dr. Peter Boehm, a pediatrician at Mosaic Medical who treats many autistic children in Central Oregon, said antibiotics
have been used in autism treatment, “but without much evidence.”
According to medical records, Green has also suggested Victor take secretin, a hormone. Combs said Victor has taken it
and that he had a bad reaction.
The hormone has been the subject of considerable research and, according to practice guidelines from the American
Academy of Pediatrics, more than a dozen well-done studies have failed to demonstrate that it is an effective treatment for
autism.
Green said most studies have shown secretin ineffective but that he still uses it because “the occasional child will show
great improvements.”
On the whole, Green said mainstream medicine “in a way” didn’t get his approach. “There is so much need for help (for
autistic children), and there’s so few physicians that are willing to relearn biochemistry and nutrition and diet.”
The physician said he’s had success in treating many autistic children. “I have lots of kids that have no longer had a
diagnosis of autism,” Green said. “It bothers me that people are willing to come to conclusions without seriously studying
the issues.”
In court documents, Green defends his treatment of Victor. He said it would be best if he continued to care for him,
without “the threat of further attack” by his mother.
The parents of three of Green’s other patients also submitted declarations to the court supporting his work. All said he had
significantly improved their children’s symptoms, and two of the three attributed the abating of all symptoms of autism to
Green’s treatment.
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Probert, in his declaration, said the same thing about Victor. He and his ex-wife “have been particularly fortunate that Dr.
Green agreed to treat Victor,” he wrote. “Victor has benefited tremendously from Dr. Green’s skills and treatments.”
About ‘chelation’
A cornerstone of Victor’s treatment is chelation, a medical process that removes heavy metals and some minerals from
the body using chemicals that bind to the metals and allow them to be excreted, primarily through urine.
Chelation is typically done when someone is determined to have heavy metal poisoning. Indeed, in some cases, it can be
lifesaving, and hospitals regularly stock chelating medications.
But some physicians said it has been used in autism without much evidence of benefit. Because the treatment, like many
medical interventions, presents some risk, these doctors contend it should not be done in autistic children. According to
the National Institutes of Health, rare side effects include heart failure and permanent kidney damage.
Victor has been doing chelation treatments for at least as long as he has been seeing Green, about eight years, according
to Combs and Probert. According to medical records, the chelation is done to treat the toxic effects of an excess of lead in
the boy’s body.
Whether Victor could benefit from chelation depends on whether he does, in fact, have too much lead in his body.
Here is where Green’s view diverges from the mainstream approach.
Green said he disagreed with the mainstream approach to lead testing because blood lead levels only show recent, not
total lifetime, exposure. He also said he treats what he calls lead “toxicity,” which he distinguished from lead poisoning.
“There’s no safe level of lead,” Green said. “If you find lead in the system, it’s a problem.”
To test for lead toxicity, Green gave Victor a test called a provoked urine test, which uses a compound to flush heavy
metals out of the body through urine. According to test results, Victor has had elevated levels of lead for several years.
That type of test has been heavily criticized as inaccurate by medical authorities.
The problem with the provoked urine test, said Dr. Sarah Present, a family physician who helped author Oregon’s lead
guidelines, is that there are no standards for what would be considered an abnormally high lead level.
In other words, she said, there is no way to interpret a result. A patient will get a number back from the test, but it’s not
clear what that number means or if it signifies a high enough level of lead to warrant chelation.
The American College of Medical Toxicology, an organization made up of physicians with expertise in testing for toxic
elements, issued a statement in 2009 saying the provoked urine test “has not been scientifically validated, has no
demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is a
concern for metal poisoning.”
Instead, most authorities recommend a blood lead level test. When Victor underwent that test earlier this year, it showed
he had a blood lead level of 2 micrograms per deciliter.
The national Centers for Disease Control and Prevention considers a level of 10 or higher elevated, and the Oregon
Health Authority, the state’s health department, may recommend chelation at 20 to 25 micrograms of lead per deciliter or
higher, said Barbara Zeal, a public health educator in the state’s lead program.
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According to court documents, Green determined that, based on the results of Victor’s provoked urine test and several
indirect measures of heavy metal toxicity, the boy would benefit from chelation.
Mainstream physicians have been particularly disparaging about using this treatment in autistic children. Most say it
carries risk without any benefit.
“It’s being applied in situations where there’s little to no evidence that it’s an appropriate treatment,” said Steinman, the
University of Washington physician. “I would say it’s one of the (treatments) I most strongly caution families against.”
Rust, the University of Virginia doctor, called chelation “dangerous” and said it should not be used.
Nickel, the developmental pediatrician in Oregon, said he didn’t use it and cited the fact that children have died in the
treatment.
Death can occur if the treatment pulls too much calcium out of the body, perhaps by using excessively strong chelating
agents or incorrect dosing, according to the CDC. Calcium is essential for the regulation of all muscles, including the
heart, and without it the heart can become fatally impaired.
In one case, an autistic boy in Pennsylvania died from the effects of chelation. The boy’s doctor, an investigation found,
had likely mixed up the forms of a chelating drug to use, giving him the wrong one.
Green, according to medical records, has used a different chelating drug with Victor than the one used in that incident.
The drug he uses, succimer, has been approved by the federal government to treat blood lead levels above 45
micrograms per deciliter. It was not implicated in the deaths made public, though it does have a long list of potential side
effects, including vomiting, diarrhea, loss of appetite, pain, fevers, headaches and elevated cholesterol.
The National Institutes of Health had planned to study chelation in autistic children but canceled the study in 2008.
According to news reports, the NIH said there was “no clear evidence for direct benefit ... and the study presents more
than a minimal risk.”
Even some practitioners who have been associated with the Autism Research Institute - an oft-cited one is Harvard’s Dr.
Martha Herbert - have distanced themselves from chelation. She told a Chicago newspaper in 2009: “I’m not defending
chelation. ... I will sue you if you say that.”
Changing situation
Combs did not introduce all these doubts in court and did not use these experts. The outside evidence she did introduce
was not mentioned until 2011, a full eight years after the divorce began.
“I complained about it, but I didn’t do very good questioning,” she said. “I didn’t know what type of questions to ask.”
In March of this year, she filed through attorney Dan Strausbaugh a motion to reopen the case to introduce evidence of
the controversy around Victor’s medical treatment.
In support of the motion, she filed her own affidavit, as did two independent physicians, Drs. Stephen Barrett and James
Laidler. The physicians’ affidavits largely echo the concerns of other mainstream physicians, noting that chelation can
have significant risk and that some of the supplements and medications may have side effects without much evidence of
benefit in autism.
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At the same time, Green also filed a declaration opposing the motion to reopen the case and defending his treatment. He
questioned the credentials of Combs’ two experts, neither of whom currently treat autistic children.
In considering whether to modify an existing custody order, judges will look for whether there has been a significant
change in circumstance of the child’s situation, said Jaime, the UC Davis attorney.
In this case, she said, the child has had autism, the child was seeing the primary care physician, and “Mom was aware of
all this stuff. So what’s changed?”
Had Combs brought her concerns into court in the initial custody hearing, said UO’s Harris, it might have been different.
When parents are first divorcing and figuring out custody, “you are not going to be able to maintain the status quo
definitionally. ... It’s going to be easier to make an argument at the point of the initial change.”
Last May, Tiktin denied Combs’ motion. In an opinion, Tiktin said, “the court can find not one word in her entire declaration
which even suggests that Victor is not doing well and is not benefiting from current treatment.”
Besides failing to find harm in Victor’s treatment protocol, Tiktin said he could not find evidence of how a change might
improve the situation. “There (is not) any suggestion that there is a better or more effective course of treatment or therapy
which Victor could become engaged in and what that might be.”
He footnotes part of Green’s declaration in his decision, affirming that Probert is the best person to care for and make
decisions about Victor’s treatment.
Combs said she does not know what she will do next. She moved to Montana this summer, for her husband’s job, and
now lives even farther from her son.
When Victor turns 18, she will need to go through another court battle for guardianship, she said, so she may wait for that.
Strausbaugh said some decisions in the hearing had largely been built on the assumption that Victor was getting
appropriate treatment.
“The question became, what if the underlying assumption, what if that’s wrong?” he said. “That could change everything.”
— Reporter: 541-383-0375, [email protected]
Published Daily in Bend Oregon by Western Communications, Inc. © 2011
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