Making a diagnosis
PANS is a diagnosis of exclusion, requiring a comprehensive evaluation. The PANDAS Physicians Network (PPN) maintains a diagnostic algorithm on its
website (see resources) as well as treatment guidelines.
The PPN draws on the expertise of more than 40
doctors who serve on its scientific and medical advisory
boards to help medical professionals better understand
“As literature is published, our expert panel updates our guidelines,” said David Brick, M.D., FAAP,
PPN president and a pediatric cardiologist. “We want
to reflect the standard of care by expert consensus.”
Much of PPN’s diagnostic guidelines are based on a
consensus statement from a 2013 PANS Consensus
Conference published in the Journal of Child and Adolescent Psychopharmacology ( http://bit.ly/2kN2aDh);
updated PPN guidelines are expected to be published
in the journal by summer.
Pediatricians should consider PANS any time a child
has an abrupt behavior change with obsessive thoughts,
said Dr. Swedo, one of the authors of the consensus
statement. These changes are so intense and out of
character that parents or the child usually can pinpoint
the day or hour that conditions began.
It has long been established that in the treatment for
rheumatic fever with Sydenham chorea, antibiotics may
be recommended despite a negative strep throat culture, Dr. Brick said. Prophylactic levels of antibiotics
should be considered for children with severe symptoms
of PANDAS, those recovering from immunotherapy or
those with multiple GAS-associated neuropsychiatric exacerbations, he said.
Cognitive behavioral therapy can benefit those with
mild impairments, according to PPN treatment guide-
lines. If symptoms persist, nonsteroidal anti-inflamma-
tory drugs, corticosteroids, intravenous immunoglobulin
(IVIG) or therapeutic plasma exchange may be neces-
sary, the guidelines state. IVIG and therapeutic plasma
exchange, however, can be expensive and difficult to get
approved by insurance.
“If (a child is) properly diagnosed, treatment is usu-
ally successful,” Dr. Brick said. “A pediatrician may
see a 7-year-old child who is normal at the beginning
of the week and by the end of the week has severely
debilitating OCD. These patients can have a significant
recovery after IVIG.”
IVIG treatment was said to be central to Holland’s
recovery. “Soon after treatment, she was walking,
Sydney Anne Rice, M.D., M.S.,
FAAP, a behavioral-developmental
pediatrician at the University of
Arizona, said her center receives
parent and physician referrals
from across the country. Many
children, like Holland, are very
sick when they arrive, requiring support from an
immunologist, sleep specialist and behavior analyst.
“The quicker these children are identified and treated,
the better they do,” Dr. Rice said.
Disorder fraught with controversy
While there is no controversy that the children have
debilitating OCD, there has been controversy about
the cause of the disorder and how to treat it.
The AAP Red Book, for example, doesn’t recognize a
relationship between PANDAS and GAS.
“We know that some children with rheumatic fever
had Sydenham chorea, a movement disorder. Many of
those children had obsessive-compulsive behaviors as
well as the movement disorder,” said Margaret C. Fisher,
Committee and Section on Infectious
Diseases, and has chaired the section.
“There is no question that rheumatic
fever is associated with GAS infection,
so there is a basis for PANDAS.
“While I think some children do
have PANDAS, I just don’t know how
to help them since the information regarding antibiotic
therapy is conflicting,” Dr. Fisher said. “I am patiently
awaiting more studies.”
Early studies with a likely selection bias fueled the confu-
sion, Dr. Brick said. In those studies, a few doctors outside
of NIMH selected patients with well-established Tourette
syndrome or classic OCD symptoms who happened to
have a strep infection, rather than patients with sudden-on-
set severe OCD.
“These patients didn’t respond as expected because they
didn’t have PANDAS,” Dr. Brick said. “Some of the doctors who published the initial studies suggesting PANDAS
is controversial are now working with us, realizing that
maybe the initial studies were studying the wrong patients.
It has taken some time to clear up that initial confusion.”
• PANDAS Physicians Network, www.pandasppn.org
• PANDAS — Q&A, National Institute of Mental Health, http://
PANDAS/PANS continued from front page
from the AAP Department of Research
New data from the AAP
Pediatrician Life and Career Experience Study
(PLACES) highlight financial characteristics of pediatricians.
Among early career pediatricians — those who graduated
from residency four to six years ago — 78% had household
educational debt in 2015. Among these pediatricians with
debt, the average is $158,000, and the average monthly
payment is $1,276. About one-fourth are earning $200,000
or more a year, and 74% own rather than rent their home
(see figure). Most pediatricians (94%) are saving for their
retirement; 37% of these pediatricians are saving as much
as they would like, and 63% would like to be saving more
Among a second group of pediatricians entering their
mid-career (graduated from residency 11-13 years ago),
46% had educational debt in 2015. Among those with debt,
the average is $88,000, and the average monthly payment is
about $800. Four in 10 are earning $200,000 or more a year,
and 94% own their home. Nearly all of these pediatricians
(97%) are saving for their retirement; 47% are saving as
much as they would like, and 53% would like to be saving
more for retirement.
Across both groups, pediatricians who earn at least
$200,000 a year are more likely to own a home and to be
on track with their savings for retirement, while those who
have higher educational debt are less likely to own a home
and be on track with their retirement savings.
“I was surprised and encouraged to learn that despite high
monthly debt payments, most young pediatricians own a
home and are saving for their retirement, although many
would like to be saving more,” said Ashley Miller, M.D.,
FAAP, a member of the PLACES project advisory commit-
tee. “Obtaining practical information on budgeting, debt
management and retirement savings as early in their careers
as possible will be particularly important for the current gen-
eration of residency graduates who are starting their careers
with higher debt.”
PLACES has 900 participants in each of two cohorts and
includes AAP members and non-members. Eighty-eight
percent of participants responded to the 2015 survey. Pe-
diatrician educational debt includes spouse/partner debt.
• The AAP Insurance Program has developed financial wellness videos, www.aapinsurance.com/resource-center, and provides access
to a student loan consolidation program, www.aap.org/discountpro
grams, to help early career pediatricians and young members develop
a solid financial foundation for their personal and professional lives.
Additional resources on financial wellness are available at www.
• For more information on the AAP Pediatrician Life and Career Experience Study, visit www2.aap.org/research/places.htm or contact
Mary Pat Frintner, in the AAP Division of Health Services Research,
at 847-434-7664 or firstname.lastname@example.org.