Tuesday, July 14, 2015

Wall Street Article on PANS (PANDAS)

From an article in the Wall Street Journal re: a study my grandson and his parents participated in.

 5 Things to Know About PANS 


 The idea that there might be a link between infections and certain psychiatric disorders has gained credence among scientists over the past few years. Resources have followed, including the creation in 2012 of a Stanford University clinic dedicated to studying and treating the condition, known most commonly as PANS, for pediatric acute-onset neuropsychiatric syndrome.  

 1. The name for the condition was coined in 2012. Researchers at the National Institute of Mental Health led by Susan Swedo focused their work on youth who had a sudden and dramatic onset of obsessive-compulsive disorder following a Group A streptococcal infection. They called that condition Pandas, or pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. Over the years, researchers recognized that many patients had symptoms of Pandas but no documented evidence of a preceding strep infection. Researchers met and established criteria that would include both infectious and noninfectious triggers for the condition and published a paper in 2012 describing PANS. Pandas is now considered a subset of PANS.

 2.  A PANS diagnosis requires more than just a sudden, dramatic onset of OCD and/or severe eating restriction. Patients must also have two or more neuropsychiatric symptoms from seven categories, including anxiety, cognitive deterioration, and sensory or motor abnormalities.

 3.  Researchers believe there might be a genetic component. The latest studies indicate that youth who get PANS might have a genetic predisposition for the syndrome, which is then likely triggered by something such as an infection or environmental factors. In a published paper describing the first 47 cases in the PANS clinic at Stanford University, researchers found that patients with PANS frequently reported psychiatric disorders and autoimmune disease in family members.

 4.  To be diagnosed with PANS, other conditions need to be ruled out. Researchers at the First PANS Consensus Conference called PANS “a diagnosis of exclusion,” meaning that doctors first must rule out other known medical conditions that may have similar or overlapping symptoms.

 5.  Parents have played a crucial role in driving awareness and research. Even while the doctors debate the condition, parents have helped drive attention to the disorder. They run chat groups and Facebook pages. They have helped get PANS and Pandas Awareness Days passed in a number of states. Beth Alison Maloney, an attorney and advocate, wrote a resource guide about the disorder and a memoir about her experience helping her son overcome Pandas called “Saving Sammy: A Mother’s Fight to Cure Her Son’s OCD.” Earlier this year, parent advocates spoke at hearings that led the Illinois Legislature to pass a bill to create an advisory committee. The committee will raise awareness and disseminate information to doctors and the public about PANS and Pandas.

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