Fwd: PANDAS

[Guest guest]

Hi, the following article from the Washington Post was mentioned in another

OCD support group and the poster sent me a copy. Thought I'd share it!

----Original Message Follows----

Obsessed by a Bug?

In Study, Bizarre Child Behaviors Possibly Linked to Strep Infection

Respond to Antibiotics

By Miriam E. Tucker

Special to The Washington Post

Tuesday, June 18, 2002; Page HE01

Instead of getting ready for school, the Kensington 13-year-old stood in

his bedroom seven years ago, flipping the light switch on and off.

Pushed along into the bathroom, he repeatedly stepped in and out of

the shower. Next he put on his shirt and took it off, over and over. " I

have to do this, " he cried. " I can't stop. "

His mother, a mental health professional, recognized the symptoms of

obsessive-compulsive disorder (OCD). But, she said, " I didn't understand

where it could have come from or how it could happen so suddenly. "

Three years later, another local parent was grappling with the same

question. Her son, then a District second-grader, suddenly developed a

complex tic, stroking his forehead down to his nose, over and over.

Certain words, like " Lord, " " Jesus, " " potty " or " body, " would set off

furious rounds of forehead-swiping, sometimes to the point of causing

him to bleed. Besides their sudden, bizarre behaviors, the two boys --

who were referred to The Post by Silver Spring behavioral therapist

Mansueto and whose names are being withheld at their families'

request -- had something else in common. Both had been ill with sore

throats shortly before their symptoms erupted.Consequently, both were

tentatively assigned a controversial diagnosis: Pediatric Autoimmune

Neuropsychiatric Disorders Associated with Streptococcal Infections, or

PANDAS for short. First described in the mid-1990s by researchers at the

National Institute of Mental Health (NIMH), the condition involves the

emergence of OCD or a tic disorder after an untreated strep throat

infection in pre-pubertal children. Which is to say, strep throat may

somehow make a child suddenly appear to " catch " obsessive-compulsive

disorder. Now, a new study suggests that quick antibiotic treatment of

strep throat in children who suddenly develop OCD or tics may prevent

these behaviors from becoming chronic lifelong problems. At a meeting of

the Pediatric Academic Societies last month, a group of pediatricians

from Rochester, N.Y., reported on 25 children who had been brought to

the doctor's office primarily because they were acting strangely; only

three complained of sore throats. Normally, odd behaviors wouldn't

prompt a physician to suspect strep, but these doctors were looking for

PANDAS: All 25 children tested positive for the infection. What's more,

when doctors administered antibiotics, both the strep infections and the

behaviors disappeared. While acknowledging that the study sample was

small and that more research will be needed, study co-author E.

Pichichero, director of Rochester's Elmwood Pediatric Center, said the

findings

are exciting because there is no known cure for either OCD or Tourette's

syndrome, a disorder involving multiple tics. " It would be amazing if a

percentage of OCD, tics and Tourette's syndrome could have an infectious

etiology that could be treated and made better, " said Pichichero, an

infectious disease specialist. But some experts, like Stanford T.

Shulman, chief of infectious diseases at Children's Memorial Hospital in

Chicago, question whether PANDAS exists at all. In an era of increasing

antibiotic resistance, they worry that parents who suspect their

children might have the condition will push for the drugs even when they

aren't necessary. " In my view, the association between the

neuropsychiatric issues and the strep infections is still unproven, "

Shulman said. Part of the problem in proving a link, he said, is that

strep infections are extremely common: Depending on a child's age and

the time of year, anywhere from 10 to 25 percent

of children will test positive for strep despite feeling fine. Some are

carriers, who always have the organism in their throats without its

making them sick; others have had an infection in the past few weeks.

" If a kid falls and breaks his arm and you do a blood test, you'll often

find evidence of a strep infection. It doesn't prove cause and effect, "

Shulman said. Bacteria and the Brain The PANDAS story began about 12

years ago, when E. Swedo, now chief of the Pediatrics and

Developmental Neuropsychiatry Branch at NIMH, and her institute

associates began looking for evidence of strep infection in children

already diagnosed with OCD or tics. In February 1998, they published a

description of 50 cases of what they called PANDAS and proposed five key

criteria for diagnosis:

• the presence of OCD or a tic disorder;

• onset in pre-pubertal children;

• symptoms that wax and wane;

• association with strep infections; and

• other neurologic abnormalities.

Untreated strep infections might trigger the disorder, the researchers

suggested, in much the way they cause rheumatic heart disease in a small

number of children. In that disease, antibodies produced by the immune

system to fight the infection mistakenly attack the heart valves. With

PANDAS, researchers hypothesized, antibodies produced to fight the strep

infection target a part of the brain called the basal ganglia, which is

associated with movement and behavior. Each time a child incurs a new

strep infection, they further speculated, the basal ganglia would come

under renewed attack, and the OCD or tics would return or worsen.

If they were right, Swedo and her associates reasoned, preventing

re-infection with antibiotics should also prevent the next OCD or tic

flare-up. However, in a preliminary NIMH trial of 37 patients published

in 1999, daily doses of penicillin given for four months had no impact

on either subsequent strep infections or OCD/tic flare-ups.

Why, then, did antibiotics work in the Rochester patients? Because,

Pichichero believes, he saw his PANDAS patients in an earlier and more

treatable phase. The implication, he said, is that parents of children

who suddenly exhibit bizarre behaviors should seek medical attention

immediately. Physicians, in turn, should check for strep throat and at

least consider antibiotic treatment if the test is positive.

But even Swedo urges caution here, saying that most children with OCD

and tics do not have PANDAS, and that strep infection may be just one of

many potential triggers of these brain disorders in children who are

genetically predisposed toward such problems. Moreover, most children

with strep, even if untreated, never develop OCD or tics. Swedos

estimates PANDAS occurs in roughly 1 in 1,000 children, making it, in

her words, " still a rare phenomenon. " The lack of clarity about PANDAS

leaves pediatricians like Northern Virginia's Bergman without

guidance on what to do when they see a patient who meets the criteria

for the disorder. Bergman, who

has a special interest in the subject because his two sons have

Tourette's syndrome, said the Rochester study's findings incline him to

consider treating such children with antibiotics right away, rather than

waiting to see how symptoms progress. But on the other hand, he said,

" I'm also very cautious and worried that everyone will jump on the

bandwagon and find PANDAS where it doesn't exist, and will

inappropriately treat kids. "

Still missing for Bergman and other physicians is a test that will

definitively diagnose PANDAS, said Lavenstein, a pediatric

neurologist who heads Children's National Medical Center's movement

disorders program in Fairfax. Such a test would pinpoint the antibodies

targeting the brain tissue and causing the abnormal behaviors. " You want

a specific test you can send to a lab to establish the link, not just a

loose association, " he said. Without that, Lavenstein said, PANDAS is

" an interesting observation, but it's still a work in progress. " Seeking

Answers The next few years could help solve the puzzle. Swedo and her

associates are now conducting a larger study in which children with

recent onset of suspected PANDAS receive daily doses of either

penicillin or azithromycin, which is more effective against strep. They

hope this study will demonstrate more clearly whether antibiotics can

reduce OCD and tic flare-ups. Results are expected within two years.

And at least three additional studies are seeking to better establish

whether there are any links among

strep infections, brain antibodies and OCD/tic symptoms.

Meanwhile, the Kensington and District boys are doing much better today,

after receiving treatment at

Mansueto's Silver Spring behavior therapy center. But they still

struggle with their mental disorders.

The District boy, now 11, is still in behavior therapy. Since last fall,

he also takes daily antibiotics, a

treatment the NIMH advises against outside of clinical trials. However,

his mother believes it important

that her son avoid further strep infections, which she said exacerbate

his tics.

The Kensington boy began taking an antidepressant and started behavior

therapy about a month after

his symptoms erupted. Within six weeks, he was better. By three months,

he had learned techniques to

control his fears until he was nearly symptom-free, his mother said.

Now 20, he just completed his sophomore year at college. He has good

grades, friends and no longer

receives any type of treatment. But he still has OCD. " When he gets

anxious or has a bad thought, he

still feels the impulse to perform a repetitive action, but now he

pretty much controls it, " according to

his mother.

Another factor is in his favor, she said: He has matured. " As with any

chronic illness, he now accepts

that he will have to pay attention to it for the rest of his life.

" Miriam E. Tucker is a health writer in

Bethesda.

© 2002 The Washington Post Company

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