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Mental ailments in children being linked to strep

By Carey Goldberg, Globe Staff, 6/28/2003

ENNEBUNKPORT, 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@globe.com.

This story ran on page A1 of the Boston Globe on 6/28/2003.
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