The Boston Globe, June 28, 2003

MENTAL AILMENTS IN CHILDREN BEING LINKED TO STREP

By Carey Goldberg, Globe Staff

KENNEBUNKPORT, Maine - Sammy Jelin, math whiz and natural comedian,
sailed through fifth grade, a school enthusiast eager for the bus
each morning. By the start of sixth grade last fall, he could barely
make it to school at all: In just weeks, his world had turned into a
minefield of germ phobias, invisible walls, and constant tics -
hallmarks of obsessive compulsive disorder and Tourette's syndrome.

By this May, Sammy's mother, Beth Jelin, was nearing her wits' end.
Then an acquaintance mentioned that her son had contracted similar
mental ailments through a streptococcus infection. The idea sounded
wild, especially because Sammy had never had strep throat. But a
prompt blood test did turn up unusually high levels of strep, and
Sammy went on antibiotics.

Within days, Sammy got so much better that Beth Jelin is
convinced that undiagnosed strep was the culprit, and a growing body
of research, though still controversial, suggests she might be right.

It could be that at least one child in every 1,000 suffers from
obsessive compulsive disorder linked to strep, say federally
financed researchers who have been exploring the connection for
several years.

Garden-variety strep, bacteria best known for attacking the throat,
is far more common than that; virtually every child catches it once
or twice a winter. And strep sometimes infects a child without
bringing noticeable symptoms.

In contrast to strep, a child has only a small chance of developing
strep-related obsessive compulsive disorder, or OCD.

But among children who do have OCD, up to one-half of those cases
could be strep-related, said one specialist, Dr. Tanya Murphy of the
University of Florida.

Skeptics say strep is so common in schoolchildren that simple chance
could dictate that it would sometimes coincide with the onset of OCD
or Tourette's.

But evidence is accumulating. Researchers in Rochester, N.Y.,
reported last year that over four years in one pediatric practice,
they had linked 25 cases of children with OCD and tics to strep.

And when those children at Elmwood Pediatric Group were quickly
given antibiotics, both the strep and the psychiatric symptoms went
away, Drs. Michael Pichichero and Marie Lynd Murphy reported at
conferences and in the Archives of Pediatrics & Adolescent Medicine.

While no one advocates prescribing antibiotics more broadly as a
precaution against OCD, some specialists say the link is now
established enough that pediatricians should order a strep test when
a child comes in with sudden-onset OCD or tics.

The connection remains little known among pediatricians, even though
it is recognized enough to have a name: PANDAS, for Pediatric
Autoimmune Neuropsychiatric Disorders Associated with Streptococcal
Infection. And dozens of studies have focused on it recently.

Several points about PANDAS are already quite clear, said Dr. Susan
Swedo, who helped discover the syndrome in the early 1990s and now
leads the National Institute of Mental Health PANDAS research team.

There is no question, she said, that a there is a group of children
with a "fairly unique clinical presentation": abrupt onset of OCD or
tics along with other unusual behaviors, from frequent urination to
high separation anxiety.

Normally, OCD develops gradually, often over years; but with sudden
onset, parents often say their child seemed to get ill overnight, or
can name the date when the symptoms started. Typical OCD involves
obsessions, often with cleanliness or fears about safety, and can
include compulsions, like repeated hand-washing.

With PANDAS, Swedo said, it is also clear that the children's
psychiatric symptoms get worse with subsequent strep infections but
fade when the strep does.

Also, she and others said, this is not the first time that
infections have been connected to psychiatric disorders. In its
advanced stages, syphilis can lead to insanity. Lyme disease has
been known to bring on psychiatric problems, and some researchers
have reported that strep may also be connected to anorexia.

There is broad agreement, Swedo said, on a possible mechanism for
PANDAS: It could be that in some children, strep triggers antibodies
that mistakenly attack the basal ganglia, a part of the brain that
helps control movement, much as antibodies mistakenly attack the
heart in rheumatic fever.

But researchers have a ways to go before they really understand what
happens, and why it happens only in certain children, Swedo said.

There seems to be a genetic element involved as well, she noted;
PANDAS children seem to have immune systems predisposed to the
disorder.

Other researchers are working to try to find biological markers or
highly objective measures to distinguish PANDAS children from those
with garden-variety OCD or Tourette's. Still others are focusing on
how best to prevent and fight PANDAS using antibiotics.

If specialists' estimates are correct, tens of thousands of children
between the toddler years and puberty may be affected.

For the past month, Jelin has been doing a great deal of research on
PANDAS and using the information to try to help Sammy. Most
recently, she has been looking into the best ways to fight strep,
and found a new study favoring amoxicillin.

"We're approaching this like a military operation," she said in an e-
mail describing the antibiotics her son is now taking. "First, we
dropped massive amounts of penicillin. Next we're sending in the
ground troops - Keflex and amoxicillin."

Before his improvement, Sammy had suffered through a wide range of
OCD and Tourette's symptoms.

He developed bruises on his arms and legs from using them, rather
than his fingers, to flick light switches. He felt compelled to hop
and clear his throat at the same time. At one point, he needed to
eat with his eyes closed.

This month, Beth Jelin said, many of those behaviors have faded,
though some remain in a less pronounced and less frequent form.

During a 20-minute conversation last week at his kitchen table,
Sammy seemed just slightly more squirmy than the average boy and was
quietly hilarious as he discussed his surfeit of self-confidence and
his economic suggestions for President Bush.

He did not want to talk about his OCD and recent improvement, but
his mother said he recently told her, "Mom, I'm a boy full of hope."

She is left wondering, she said, "How many children are there out
there with mental health diagnoses where we're not really looking
for the physical cause?"

Swedo cautions parents of children diagnosed with OCD not to get
their hopes up. She has heard from many parents who were crushed
when their children's strep tests turned up nothing.

Still, she said, if a child fits the PANDAS profile, "it's really
worth it to look for an asymptomatic strep infection." Prompt
antibiotic treatment, she said, "can cause a pretty dramatic
improvement in the symptoms. It's not very often, but it is worth
it."

Or as Sammy put it when asked what he would tell other children who
run into problems like his: "It's very good to test this kind of
thing out because, frankly, it's not very fun to have."

"It's exhausting," he said. "Something you have to keep in mind is,
don't worry, it's not just you." Carey Goldberg can be reached at
goldberg@....

http://www.boston.com

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