The PANDAS puzzle: Strep, OCD – and violence?

By Jenny Westberg, Portland Mental Health Examiner, June 7, 2013

Handwashing Could a case of strep throat turn your child from a normal, happy kid to a potential killer?

It’s the stuff of parental nightmares, almost too bizarre to believe. But for Marianne Fox, whose 17-year-old son, Grant Acord, now stands accused of planning a murderous spree through West Albany High School, it’s all too real.

In a statement, Fox blamed a rare and controversial strep-related subtype of OCD, known as PANDAS, for the sudden, extreme symptoms of mental illness that descended on her son, and may have led him, inexorably, toward the unthinkable.

In PANDAS – the acronym stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci – sudden, severe OCD symptoms follow a bout with strep throat, causing a radical change in a child’s behavior, literally overnight.

Nineteen felonies

Acord was arrested May 28 after a police search of his home turned up weapons and handwritten journals containing meticulously detailed plans to shoot fellow students at his high school, throw bombs into the school, then kill himself before police arrived.

He is charged with one count of aggravated attempted murder and six counts each of manufacturing a destructive device, possession of a destructive device, and possession of a weapon with intent to use it against another person. All 19 charges are felonies.

Acord is being held at the Linn-Benton Juvenile Detention Center on $2 million bail. He was excused from attending a brief procedural hearing Tuesday, with his court-appointed attorney appearing on his behalf. His next hearing is scheduled for July 16.

Link to violence

Was PANDAS to blame?

Irritability and aggression are mentioned in the diagnostic criteria as possibly associated with PANDAS — along with numerous other possible symptoms — but the International OCD Foundation disputes the idea that obsessive-compulsive symptoms are linked to violence.

“PANDAS, like other forms of OCD, can be characterized by fears of doing something terrible, but not acting on those fears,” said Jeff Szymanski, PhD, executive director of the IOCDF.

“PANDAS is typically associated with an abrupt onset of concentration problems, inattention, hyperactivity and loss of fine motor control in kids, which would severely compromise the ability to plan or orchestrate any sort of coordinated attack.”

“OCD is not rational, but it is also not violent,” Szymanski said.

Mother grieves

Troy Fox, Marianne Fox’s ex-husband, said Acord lived with him between the ages of 12 and 15.  He described Acord as a “good kid” who liked camping and video games.

At her son’s arraignment, Marianne Fox wiped away tears.

“My heart goes out to everyone affected” by her son’s illness, her statement said. “I grieve for my son.”

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What is PANDAS?

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci) refers to a rare condition marked by unusually rapid onset of OCD and/or tic symptoms following a strep infection.

How is PANDAS diagnosed?

Doctors look for the following criteria:

  • Obsessions, compulsions, or tics
  • In a child or teenager
  • Unusually fast onset (from zero to maximum impairment in 24-48 hours); or symptoms that follow an “on-off” pattern.
  • Neuropsychiatric symptoms (such as anxiety, panic attacks, clingy behavior, problems with concentration, loss of academic ability, hyperactivity, sensitivity to sound or light, bed-wetting, irritability, or others), also with sudden onset

In addition, a PANDAS diagnosis requires a preceding strep infection. There are two ways to confirm strep.

  • A properly done throat culture (the swab must touch the back of the throat, causing the child to gag) with positive results. Rapid strep tests have a 10-15% rate of false negative results, so a negative result from the rapid test needs to be confirmed with an overnight test.
  • Two separate blood tests, done several weeks apart, showing rising titers (concentrations) of antibodies to strep.

A confirmed strep infection is not enough by itself to diagnose PANDAS, but it is a requirement for the diagnosis.

It is often impossible to verify that an earlier strep infection took place. It may have been unrecognized at the time, or it was recognized but no throat culture was done, or the throat culture was done but was inadequate. If strep cannot be confirmed, no matter what the reason, PANDAS cannot be diagnosed.

What’s the controversy?

The part about strep. Research on a relationship between strep and OCD symptoms has still not shown convincingly that strep is the inciting factor. If strep is not part of the equation, some experts say, what gets called “PANDAS” could just be the extreme end of the OCD spectrum. Others say strep is so common in childhood, it’s in virtually every classroom, and most kids who get strep do not develop OCD or tics. So there could be any number of inciting causes (“Why not just argue that recess causes OCD?”) — or none at all.

The controversy has gotten heated, with doctors and hospitals who refuse to diagnose PANDAS at one end, and groups of frustrated parents who are sure their child has PANDAS on the other.

In 2010, experts on both sides got together at the National Institutes of Health. But instead of resolving the PANDAS problem, they ended up defining a whole new condition – PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome. PANS includes PANDAS cases and many more, by removing the strep requirement and focusing instead on the sudden onset of symptoms. Children who meet all the criteria for PANDAS except for strep may now be diagnosed with PANS.

So, why do some parents continue to agitate for their child to get a diagnosis of PANDAS?

There’s a possibility it might make certain treatments available to their children. Or, on the other hand — as Neil Swidey of the Boston Globe put it – these parents “might simply be seeking a socially acceptable antibiotic answer to what is more likely traditional (often inherited) OCD.”

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More Information:

NIMH Pediatrics & Developmental Neuroscience Branch Intramural Research Program – PANDAS

International OCD Foundation – What is OCD?