Maybe one day I'll see one

On May 23 and 24, 2013, the First PANS Consensus Conference was convened at Stanford University, calling together a geographically diverse group of clinicians and researchers from complementary fields of pediatrics: General and developmental pediatrics, infectious diseases, immunology, rheumatology, neurology, and child psychiatry. Participants were academicians with clinical and research interests in pediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS) in youth, and the larger category of pediatric acute-onset neuropsychiatric syndrome (PANS). The goals were to clarify the diagnostic boundaries of PANS, to develop systematic strategies for evaluation of suspected PANS cases, and to set forth the most urgently needed studies in this field. Presented here is a consensus statement proposing recommendations for the diagnostic evaluation of youth presenting with PANS...

Many children with PANS are extremely ill, with extreme compulsions (licking shoes, barking), motor and phonic tics (whooping, wringing hands), behavioral regression, and terrifying episodes of extreme anxiety or aggression. The behavioral manifestations often prompt rapid referral to psychological or psychiatric services, but all patients should receive a full medical evaluation. It should be noted that PANS is a “diagnosis of exclusion” and that other known medical diseases must be ruled out before a diagnosis of PANS is assigned...

PANS-related abnormalities that might be present on physical examination include: Dehydration or emaciation secondary to restricted intake of fluids or food; sequelae of compulsive behaviors (e.g., red ring around the mouth from excessive lip-licking, chapped hands from excessive washing or irritation of the external genitalia from excessive wiping); motor and/or phonic tics; evidence of sinusitis, chronic otitis, tonsillitis, or pharyngitis; and/or signs of GAS infection (i.e., pharyngitis, anal or vulvar redness, skin lesions)...

Currently, Moleculera Labs (www.moleculera.com) is the only Clinical Laboratory Improvement Amendments (CLIA)-certified/Commission on Office Laboratory Accreditation (COLA)-accredited laboratory that provides testing for antitubulin, antilysoganglioside and antidopamine receptor antineuronal antibody titers by enzyme-linked immunosorbent assay (ELISA), as well as assays to measure CaMKII signaling. Although the Moleculera panel can provide useful ancillary information for children with suspected PANDAS, it is not yet clear that the assays are helpful for the larger cohort of children meeting PANS criteria (without GAS etiology). More research is needed to delineate the sensitivity and specificity of these tests for youth with PANS...

Disclosures...
Dr. Madeleine Cunningham is co-founder and chief scientific officer of Moleculera Labs, which provides specialized antineuronal antibody testing. Several members of the PANS Collaborative Consortium have scientific collaborations with Dr. Cunningham. The other authors have nothing to disclose.

Chang Kiki, Frankovich Jennifer, Cooperstock Michael, Cunningham Madeleine W., Latimer M. Elizabeth, Murphy Tanya K., Pasternack Mark, Thienemann Margo, Williams Kyle, Walter Jolan, Swedo Susan E., and From the PANS Collaborative Consortium.  Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference.   Journal of Child and Adolescent Psychopharmacology. February 2015, 25(1): 3-13.