Maybe one day I will see one.
By 2015, when Adam was 8, Elliott began to fear she might have
to have him hospitalized. She took him for a full psychological evaluation with
Rebecca Daily, an autism specialist at the University of Oklahoma. During the
visit, Elliott mentioned that Adam’s problems had all started when he was a
toddler, around the time he had had his tonsils and adenoids removed. Doctors
had recommended the surgery because he had had so many bouts of strep throat.
“What did you say?” Daily asked.
Elliott repeated what she had said.
She remembers Daily then saying: “This is not autism, this
is not ADHD. This is a disease called PANDAS.”
Elliott had never heard of PANDAS, short for ‘pediatric
autoimmune neuropsychiatric disorders associated with streptococcal
infections.’ But the diagnosis had been gaining traction over the previous two
decades. In 1998, Susan Swedo, then a pediatrician at the U.S. National
Institutes of Health (NIH), first proposed PANDAS to explain an apparent
association between strep throat, obsessive-compulsive disorder (OCD) and tic
disorders such as Tourette syndrome. By Swedo’s estimate, the condition affects
up to 1 in 200 children, but many experts contest that figure — and even the
condition’s very existence.
Pediatric neurologists point out that Tourette syndrome and
OCD are highly heritable; if strep plays a role in these conditions at all, it
is extraordinarily rare. Strep, by contrast, is common. In one study that
followed 814 children for 12 weeks, for example, about half of the children had
ongoing strep infections, and they did not show more obsessive-compulsive
behaviors or tics than the other children.
Still, PANDAS has attracted a vocal band of proponents who
have proposed it as a catchall for a wide range of mental health issues
sometimes lumped under the broader term ‘autoimmune encephalopathy.’ The list
of purported triggers has grown from strep to include Lyme disease,
mononucleosis and herpes. And the range of possible outcomes has expanded to
encompass ADHD, anorexia nervosa and autism. The boundaries between these
diagnoses can be subjective, and some clinicians and parents are quick to
attribute obsessive-compulsive behavior to PANDAS, even when it may stem from
autism, OCD or something else. “There’s going to be diagnostic confusion
whether a child has a late presentation of autism or if they have PANDAS,”
Swedo says.
Daily recommended that Adam take a test developed by a
colleague of hers, microbiologist Madeleine Cunningham. Oklahoma-based
Moleculera Labs, which Cunningham co-founded, markets the $925 test — called
the ‘Cunningham Panel’ — for children who are not responding to treatments for
psychiatric conditions and who may instead have “a treatable autoimmune
disorder.” One brochure reads: “Could an infection be causing your child’s
symptoms?”
Whether they pursue the test or not, parents who suspect
their child has PANDAS often end up seeking expensive, unproven and potentially
dangerous treatments — including, in rare cases, rituximab, an
immunosuppressant typically used for cancer treatment and organ transplants
that has serious, sometimes deadly, side effects. Medical quacks and profiteers
have thrived, largely unchecked in a marketplace that intersects with the outer
fringes of the autism and chronic Lyme communities. One Oklahoma company, for
instance, markets donkey milk as a PANDAS treatment. Most parents end up paying
out of pocket, but five states have passed laws mandating insurance coverage
for treatment of the condition.
The condition’s rising popularity notwithstanding, several experts
say the way it is being diagnosed and treated is worrisome. “Allow me to be
considered a naysayer,” says Edward Kaplan, an expert in streptococcal
infections at the University of Minnesota in Minneapolis. He says there may be
a neurological trigger for the behavioral changes in some children diagnosed
with PANDAS, but the link to strep is tenuous at best. “This disease is
diagnosed by all kinds of people more frequently than perhaps it should be.”…
Swedo then inverted her approach. Rather than seeking out
children with rheumatic fever, she began studying children with OCD and
Tourette syndrome, and swabbing their throats for evidence of a strep
infection. She often found it — which is not surprising because it is a common
infection, and many children also carry the bacteria without getting sick. What
was surprising, Swedo says, was what happened when she started treating those
children.
She recalls one child who refused to swallow his spit,
preferring, instead, to stockpile it. “He had three cups under his bed,” she
says. When she treated him with penicillin, she says, “he responded
beautifully; his obsessive-compulsive symptoms disappeared.” He then had
another strep infection, and the OCD-like behavior “came roaring back.” In
another child, she tried ‘plasmapheresis,’ a technique to separate the child’s
blood cells from the plasma and strip out the germ-fighting antibodies
circulating in his system. She says that led to an 80 percent decrease in the
boy’s OCD traits, according to his parents…
It was PANDAS that would become Swedo’s legacy. In 1998,
Swedo proposed five criteria to diagnose PANDAS: the presence of OCD or a tic
disorder, sudden onset prior to puberty, a waxing and waning pattern of trait
severity, an association between strep infections and behavioral traits, and
neurological abnormalities such as jerking movements or problems with
coordination. Despite the clear, testable criteria she laid out, the definition
of PANDAS proved elastic in the hands of practitioners. By 2008, one study had
found that only 39 percent of children diagnosed with PANDAS actually fit
Swedo’s original definition. So many children were diagnosed, in fact, that
Stanford University’s multidisciplinary PANDAS clinic — the first of its kind
when it opened in 2012 — sees children from within only a seven-county area and
only if they agree to participate in research.
Given the surge of interest, the NIH launched a $3 million
multicenter study — the largest and most rigorous analysis of the condition.[1] The researchers followed 71 children who met PANDAS diagnostic criteria over
two years and compared them with children who had traits of Tourette syndrome
or OCD but not PANDAS. Two landmark studies, published in 2008 and 2011, found
that in 91 percent of all PANDAS cases, there was no association between the
timing of strep infections or presence of strep antibodies and flare-ups of OCD
or tics. Even though children with PANDAS were more likely to receive
antibiotics than the other children were, the researchers could detect no
difference in the number of flare-ups the children experienced…
Cunningham tested whether these five molecules might serve
as diagnostic markers for PANDAS and concluded that they did. But in 2008,
independent studies at Johns Hopkins University in Baltimore, Maryland, raised
doubts about the utility of Cunningham’s biological markers and the link
between infection and PANDAS flare-ups.
That did not keep Cunningham’s team from the patent office:
In 2011, Cunningham and Craig Shimasaki, a molecular biologist and
entrepreneur, founded Moleculera Labs to commercialize the test Cunningham had
developed. Their website says that a single elevated enzyme “may indicate a
clinically significant autoimmune condition.” This claim clashes with published
results showing similar levels of the enzyme in people with and without PANDAS.
Moleculera has reported that autistic children may also receive a positive
result, raising further questions about the utility of the test…
In one 2017 study, the Cunningham Panel did not distinguish
20 people with psychiatric conditions who met the formal criteria for PANDAS or
PANS from 33 who did not.[2[ Susanne Bejerot, professor of psychiatry at Örebro
University in Sweden, who led the study, was so disturbed by the findings that
she recruited 21 controls — including a fellow doctor with no history of mental
illness — to take the test. She found that 86 percent tested positive for at
least one of the five markers on the Cunningham Panel. “Parents are very happy
about the Cunningham Panel because they always get positive results,” Bejerot
says. “That means they can show it to a clinician and get antibiotics or other
treatments.”…
[Donald] Gilbert studied philosophy before he became a doctor. He
gives lectures on PANDAS that sound more like epistemology than medicine, as he
explores the role of inference and the nature of causality. “I’m a skeptic by
nature,” he says.
In August 2018, Gilbert gave a talk for primary care
physicians with the relatively staid title “PANDAS and PANS: A clinician’s
guide to management.” In it, he challenged the anecdotal evidence PANDAS
supporters frequently cite. He also recommended that, unless OCD traits make it
impossible for a child to attend school, clinicians should not run any tests,
offer any treatments or provide any neurology referrals. In his slides, he
wrote: “Inoculate the family with education so they do not seek out a
PANDAS/PANS clinic.”
After the Cincinnati Children’s Hospital posted a video of
the talk online, the PANDAS Network, a nonprofit advocacy organization that is
listed as one of the National Institute of Mental Health’s Outreach Partners,
shared it on Facebook. All hell broke loose. “Move over you foolish man,” read
a comment from the PANDAS Network’s account. “Step away from the podium.”
“His swipes at Dr. Swedo and Cunningham … are so incredibly
rude and flat-out unprofessional,” one commenter wrote.
“This man needs to be stopped,” wrote another.
Within a week, the group had issued a “call to action,”
directing its members to file complaints against Gilbert with the Ohio State
Medical Board and the Accreditation Council for Continuing Medical Education.
“[Dr. Gilbert] mocked the disorder, disparaged researchers, misled attendees,
encouraged physicians to commit medical malpractice, and generally enjoyed a
jolly good time laughing along with his colleagues at desperate parents,”
attorney Beth Maloney wrote in a letter to his employer. “The general medical
bigotry that was on full display caused me to wonder whether your hospital will
next try to take PANDAS children from parents who disagree with its doctors.”
Gilbert says he was upset by the attacks but chose to ignore
them at first. When he attended a professional conference a few months later,
however, the organizers left his name off the program and advised him to
register at the hotel under a false name for his own safety. While he was there, he says, Swedo, who
retired from the NIH last year and now serves as chief science officer for the
PANDAS Physicians Network, asked to meet him.
When they met in the conference hotel, Swedo handed him
printouts of his slides along with her handwritten responses. Gilbert disagreed
with her about the science but says he saw that she wanted him to recognize the
rigor in her own work. Swedo says she remains deeply offended that Gilbert
compared her to a quack. “I had grounds to sue him, but I chose not to,” she
says. She says she tries to warn parents about snake-oil salesmen and shuns
healthcare providers she believes are over-diagnosing PANDAS. She lays blame
for the explosion in questionable fringe therapies on the PANDAS naysayers such
as Gilbert. “The controversy is responsible for the overtreatment of these
kids,” Swedo says. “Mainstream medicine has failed to deliver recognition of
suffering and a promise that we are going to find out what is happening.”
https://www.spectrumnews.org/features/deep-dive/how-a-controversial-condition-called-pandas-is-gaining-ground-on-autism/
[1] Leckman JF, King RA, Gilbert DL, Coffey BJ, Singer HS, Dure
LS 4th, Grantz H, Katsovich L, Lin H, Lombroso PJ, Kawikova I, Johnson DR, Kurlan RM, Kaplan EL. Streptococcal upper respiratory tract infections and exacerbations of tic and obsessive-compulsive symptoms: a prospective longitudinal study. J Am Acad Child Adolesc Psychiatry. 2011 Feb;50(2):108-118.
