PANDAS, pediatric autoimmune neuropsychiatric disorders
associated with streptococcal infections, is used to describe a
subset of children who have obsessive compulsive disorder or tic
disorders such as Tourette's syndrome.
These children usually have dramatic "overnight" onset of
symptoms, including motor or vocal tics, obsessions or compulsions.
In addition to these symptoms, children may also become moody,
irritable or show concerns about separating from parents or loved
This abrupt onset is generally preceded by a strep throat
Source: National Institute of Mental Health
Wendy and Tom Nawara couldn't figure out why their 9-year-old
son, Charlie, kept grunting, clearing his throat, and nodding his
head in an odd, repetitive fashion.
The Naperville couple first noticed it in August 2009, yet the
bizarre, persistent and unexplainable behavior-called
tics-continued through the rest of the year. The involuntary tics
interrupted his regular activities, his school work, and even his
Their doctors' indifferent and uneducated attitudes didn't
pinpoint a cause, let alone diagnose the condition, so Wendy began
searching for answers for her son's worsening condition. She
stumbled onto a possible explanation after watching an intriguing
episode of the TV show "Mystery Diagnosis."
It's called PANDAS (pediatric autoimmune neuropsychiatric
disorders associated with streptococcal infections). The
often-misdiagnosed disorder produces antibodies to fight strep
infections that also seem to attack the brain, triggering
sudden-onset behavioral disorders such as tics, Tourette's
syndrome, and obsessive compulsive disorder.
She insisted on a throat culture for Charlie, who was already
withdrawing from school, from his fellow students, and from his
past life as an easy-going kid who once blended with friends like a
toy in a toy box.
The rapid-screen throat culture test in the pediatrician's
office was negative but, at an outside lab, it tested positive for
strep-the key trigger for PANDAS-like illnesses. Charlie, their
fresh-faced little boy whose brain was going haywire, was an
The dots began connecting for Charlie's parents, who did more
research on the controversial disorder that has now gained national
attention. Earlier this year, more than a dozen high school
students in LeRoy, N.Y., displayed unusual, yet similar tics,
verbal outbursts, and odd behavior. Medical experts reasoned that
PANDAS may have been behind it, though critics claim it's not.
The Nawaras are convinced it's PANDAS at work.
"What happened to those families in LeRoy is exactly what
happens to every PANDAS family, except it is now happening on a
national stage," Wendy Nawara says. "It's time for this to come
out. Kids' immune systems are broken and we need to find out
There is no single, standardized lab test for doctors to
diagnose PANDAS, according to the National Institute of Mental
Health. Instead, the agency offers criteria guidelines, including a
presence of OCD or tic-like symptoms, the pediatric onset of
symptoms, and a positive throat culture for strep (or a history of
"Children usually have dramatic, 'overnight' onset of symptoms,
including motor or vocal tics, obsessions, and/or compulsions,"
states the NIMH, which is enrolling children with PANDAS for a
study to evaluate treatment options. "Children may also become
moody, irritable or show concerns about separating from parents or
Another obstacle is that many pediatric PANDAS patients fall
through the diagnostic cracks between psychiatry and immunology.
And, claim a growing number of advocates (including doctors), the
medical community is wrongly dealing with PANDAS by having two
doctors treating the same disease.
"Most doctors are not connecting the dots, so parents have to,"
says Charlie's physician specialist, Dr. Miroslav Kovacevic, from
the Loyola University Stritch School of Medicine in Hinsdale.
"Parents are leading this grassroots movement to better
Kovacevic has treated hundreds of patients of various ages
through the years, though most are children who affectionately call
him "Dr. K." Still, adults, too, are suffering from PANDAS-like
conditions, including an elderly NASA engineer, he says.
"It's much more common than we previously thought," says the
67-year-old nationally renowned expert on PANDAS and one of only a
few physicians who treat the disorder.
Interestingly, most children are infected with strep at some
point in their life, yet only a fraction of them develop
PANDAS-like symptoms. Possibly, some are genetically vulnerable, or
the perfect storm of circumstances is created, Kovacevic notes.
First recognized and labeled in the mid-1990s, PANDAS is now a
controversial subject in the medical community. The greater
awareness of strep-triggered PANDAS has in turn triggered
scientists to revisit the idea that some mental illness may be
caused by infections. Studies also have suggested this once widely
dismissed causal link.
On a broader, more hypothetical spectrum, the possible
implications of this issue are "mind-boggling," Wendy Nawara
"What if mental illnesses such as Tourette's syndrome or OCD
could be halted in childhood with antibiotics?" she asks.
"Pediatricians would be able to rapidly screen these kids and
actually know the protocol to follow."
Such thinking is premature, and possibly pie in the sky, but one
thing is certain. Parents need to become better "medical
detectives" in their children's lives, the Nawaras insist.
Their daughter has exhibited similar signs of this disorder with
numerous obsessive compulsive symptoms, including a neck-rolling
tic that she copes with by dancing. She also has unwarranted
worries, intrusive thoughts and insomnia.
Typical with other PANDAS cases, her brother Charlie was treated
with antibiotics, including a more invasive treatment considered
the "gold standard"-it's called IVIG, intravenous immunoglobulin.
The procedure involves infusions of donor plasma to prompt the
immune system back into normalcy.
"He's also taking natural anti-virals and anti-fungals to
protect him from the viruses and bacteria that are always present
in a kid's daily life," his mother says.
However, Charlie missed much of the last school year, he showed
germ-exposure anxiety when he did attend, and he had to take a few
classes via Skype.
In other words, PANDAS kept him from being a normal kid by
seeping into his psyche through his body.
Kovacevic advises concerned or confused parents to look for
profound changes in their child's daily behavior. Do they exhibit
any odd tics? Unusual, unexplained behavior? Was there a recent
infection, especially involving strep?
"Not every child with a tic has PANDAS," he says. "But a tic is
not always just a tic. It's better to explore this than to simply
ignore it. A closer look is strongly advised."
Wendy's advice is to order a throat culture even against your
doctor's advice if answers or a diagnosis are not forthcoming. She
also recommends the book, Saving Sammy: A Mother's Fight to Cure
Her Son's OCD, by Beth Alison Maloney.
The Nawaras recently found out their entire family has "specific
antibody deficiency," which helps explain why the strep infection
quickly kidnapped their kids' health.
Wendy has since begun writing a book and starting the PANDAS
Parent Support/Illinois, along with another "PANDAS mother."
"I know there are numerous families close by who are suffering
through the process of diagnosis and early treatment," she says.
"Perhaps if parents are armed with information, they can educate
doctors, and the doctors will demand the clinical studies. It's a
little backwards, but it just might work."
Jerry Davich is a freelance writer and father of two living in the Chicago area.
See more of Jerry's stories here.
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