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November 10, 2004

BehindTheMedspeak: Is obsessive-compulsive disorder an infectious disease?

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Heather Won Tesoriero, in the November 2 Wall Street Journal, reported the results of two new and provocative studies examining a potential link between strep throat and the onset of obsessive-compulsive disorder (OCD) in children.

Here's the article.
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Strep Throat Tie To Behavior Problem Is Studied

Two Efforts Look at Link Between Bacterial Infection And Disorder in Children


Two new studies are examining a potential link between the bacteria that cause strep throat and the onset of obsessive-compulsive disorder in some children.

The studies are the latest in a series to try to better understand a condition called Pandas, which stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection.

Children with Pandas develop obsessive-compulsive disorder, often accompanied with tics or Tourette's Syndrome, after strep throat, the common childhood ailment brought on by group A beta-hemolytic streptococcus.

Researchers believe that Pandas is one of several conditions resulting from antibodies attacking the basal ganglia, a set of structures at the base of the brain that help control and coordinate movements.

When strep goes undetected or untreated, in some cases the body can build up antibodies to strep that also mistakenly attack the brain, according to the theory.

Obsessive-compulsive behaviors in Pandas patients relapse and remit, flaring up when a child has repeated bouts with strep.

In many cases, less pronounced OCD symptoms persist even when the child doesn't have a strep infection.

One six-month study currently being conducted at the National Institute of Mental Health is examining the prophylactic use of penicillin to prevent recurrence of OCD symptoms in children.

A second, year-long NIMH study is comparing the OCD traits in Pandas and non-Pandas cases. Both studies have begun but are also enrolling new patients.

The Pandas link was discovered in 1998 by Susan Swedo, a senior investigator in the intramural research program at the NIMH.

Dr. Swedo and Judith Rapoport, another senior investigator, drew upon research showing that children with multiple motor tics experienced obsessive-compulsive traits, such as repetitive behaviors and counting.

Dr. Swedo was looking for a medical model for OCD, and made the connection that some kids experienced pronounced OCD symptoms when they had strep throat.

Epidemiological data suggest that approximately 1% to 1.5% of children suffer from obsessive-compulsive disorder; of these, one in 10 meet the full criteria for Pandas, or about one in 1,000 of all children.

Pandas isn't known to affect adults, 98% of whom have developed strep antibodies.

Researchers have found that children with Pandas have abnormally high levels of strep antibodies.

They also believe that kids with a family history of OCD may be more susceptible to Pandas.

One of the key symptoms of Pandas is an "explosive onset" of obsessive-compulsive behaviors.

Some classic traits are disturbing intrusive thoughts, abnormally frequent urination, and inappropriate separation anxiety.

Children may also develop a physical tic, such as pronounced eye-blinking.

"Kids will have a lot of unusual fears that weren't there before," says Tanya Murphy, a pediatric-OCD expert at the University of Florida in Gainesville who is collaborating with Dr. Swedo on the two new studies.

When a child is diagnosed with Pandas and also has a positive culture for strep, researchers recommend treatment with antibiotics.

Often OCD symptoms will dissipate, though they tend to re-emerge with subsequent bouts of strep throat.

Two years ago, Maggie Mitchell, who is now 9 years old, of Orlando, Fla., became unusually upset about separating from her parents, and repeatedly needed reassurance that she was "a good girl."

Her mother, Terrie, knew something was wrong.

Maggie's symptoms worsened, and her motor skills deteriorated.

In researching her daughter's symptoms on the Internet, Mrs. Mitchell came across Pandas.

Mental-health professionals steered her toward Dr. Murphy.

Maggie's OCD now is generally under control.

Relatively few doctors know about Pandas, and some don't believe the condition exists.

Others worry that some physicians would start putting kids on antibiotics, which they fear are already over-prescribed, without a proper Pandas diagnosis.

"I think the problem is that it's hard to sort out," says Jon McClellan, a child and adolescent psychiatrist in Tacoma, Wash.

"Just because you have tics" and a blood test indicating you've had strep at one point, "it doesn't mean that you have Pandas."

But many child-development experts agree that the apparent connection at least merits more exploration.

"At this point in time, there is a fair amount of research evidence supporting the existence of this syndrome. It's clearly a fascinating phenomenon and an area where ongoing investigation is currently under way," says David Fassler, clinical associate professor of psychiatry at the University of Vermont College of Medicine, who isn't involved in the studies.

Parents are anxious for answers.

Tracey Caraway's 7-year-old son, Owen, had strep last March.

One day, he grew very upset by a series of disturbing thoughts. Mrs. Caraway says doctors told her that her son might have any number of mental conditions, but no one recognized his intrusive thoughts as sudden-onset OCD.

"We have not been able to find a single doctor who knows about or believes in Pandas in our area," says Mrs. Caraway, of Mobile, Ala.

"It's the most frustrating thing I've experienced."

Now, every six to eight weeks, the family drives eight hours to Florida for the study with Dr. Murphy.

But Mrs. Caraway believes it's well worth the trek.

"If it were 25 hours," she says, "we'd still go."

Mrs. Caraway, who a few years ago learned that she has mild OCD, says her five-year-old daughter exhibits some signs of it.

Other treatments to help relieve OCD symptoms include antidepressants and cognitive behavioral therapy.

Last week, a study published in the Journal of the American Medical Association found the combination of antidepressants and cognitive behavioral therapy to be most effective in treating OCD in children.

Marie Lynd Murphy, a pediatrician with Elmwood Pediatric Group in Rochester, N.Y., who studies Pandas, says, "If kids have OCD symptoms, they need to have a throat culture. Treating strep is crucial."

Dr. Murphy emphasizes that the vast majority of children with strep won't develop OCD, but that it's important to have the test when a child exhibits explosive onset of OCD.
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A STREP SIDE EFFECT?

Doctors recommend that children who exhibit an "explosive onset" of obsessive-compulsive behaviors have a throat culture to test for strep.

Symptoms include:

• A continuous need for reassurance
 
• Intrusive thoughts
 
• Age-inappropriate separation anxiety
 
• Frequent urination
 
• Hand-washing, counting, obsession with germs
 
• Physical tic, such as pronounced and frequent eye-blinking
 

The National Institute of Mental Health is currently enrolling patients in two studies on "Pandas" (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). 

For more information, call Lorraine Lougee, LCSW at 301-496-5323.

Other resources:

• Obsessive-Compulsive Foundation
www.ocfoundation.org
203-401-2070 (info@ocfoundation.org)
 
• Tourette's Syndrome Association
www.tsa-usa.org
718-224-2999 (ts@tsa-usa.org)
 

November 10, 2004 at 10:01 AM | Permalink


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Comments

How would you go about making a scientific report about an obsessive compulsive disorder such as the washing of the hands thinking it's never clean?

Posted by: Muqs | Feb 20, 2008 4:32:27 AM

I am the Tracey Caraway mentioned in this article. Since my son's severe onset of PANDAS at age 6 (He is now 11), I have come to believe that this disease hits hard and fast, and damages the brain, much like a stroke. Any type of infection can cause the brain to have this allergic reaction to the antibodies your children are producing....not just strep. Fungi and viruses can also trigger reactions. Not only is the child practically debilitated with OCD, they have motor problesm, attention and concentration problems, learning problems and chronic health issues usually related to sinus and ENT. There are very, very few doctors who have ever heard of this, much less know what it is.

Posted by: Tracey Caraway | Feb 2, 2008 10:21:57 PM

My 16 year old son began to complain of an inability to concentrate last fall. Shortly afterward, he was diagnosed with strep (quick strep test), even though he had no symptoms of strep throat (no fever,no sore throat, no fatigue). He went on antibiotics (Amoxicillin) for 10 days, was rechecked for strep (clear) and yet has continued to have problems with concentration and deteriorating mental ability. He has had several episodes of an onset of weakness (especially in his legs), extreme paleness and shakiness, staring, neck stiffness, racing thoughts, and chest pain. He feels as if he's "retarded" or "going crazy" (his words) and no doctor has been able to help us find out what's causing this. He cannot do his schoolwork due to the complete mental fog that he is experiencing all the time and to an increasing degree. Help!

Posted by: India Dennis | Apr 8, 2007 11:50:26 PM

my 18 year old brother has been suffering with ocd for about 2 years now and it all started immediately after his appendix burst leading to severe peritonitis which went undetected by the surgeons for a few days before he was operated on is it possible that this severe bacterial infection which almost killed him could be to blame for his ocd?

Posted by: rebekah owen | Mar 5, 2005 9:14:09 AM

I just want to say that i have had severe OCD for years with little help from current treatments available for it!And it is a damm shame that such a destructive disease does not have better treatment, more research etc.!! This disease is HELL ON EARTH, and many more people from around the world have it then was previous thought!!It is estimated in the U.S. alone that 6 to 8 million suffer from this disease and probably more, but because of the stigma attached to it some suffer in silence, like i did for years!! Thank you

Posted by: Tony | Nov 26, 2004 1:43:08 AM

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