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International Guidelines

Clinical guidance for diagnosis and management of PANS in the Nordic Countries

(2021)

Clinical guidance and treatment aims

These guidelines, co-authored by British Paediatric Neurology Association members, recommend a comprehensive medical history work-up which includes symptom assessment related to infectious, autoimmune and rheumatic diseases as well as psychiatric, neurologic and neurodevelopmental diseases. The treatment aims outlined in the Nordic countries guidelines are threefold: treating ongoing verified infections, suspected inflammation and mental health symptoms.

Pfeiffer, H., Wickstrom, R., Skov, L., Sørensen, C., Sandvig, I., Gjone, I., Ygberg, S., de Visscher, C., Nordstrom, S., Herner, L., Hesselmark, E., Hedderly, T., Lim, M., Debes, N., Acta Paediatrica. 2021;110:3153–3160.

Clinical management of Pediatric Acute-Onset Neuropsychiatric Syndrome

(Parts I, II, and III, 2017)

Part 1 – Psychiatric and Behavioural Interventions

Thienemann, M., Murphy, T., Leckman, J., Shaw, R., Williams, K., Kapphahn, C., Frankovich, J., Geller, D., Bernstein, G., Chang, K., Elia, J., Swedo, S. (2017) Journal of Child and Adolescent Psychopharmacology. V27(7) pp1-8

Part 2 – Use of Immunomodulatory Therapies

Frankovich, J., Swedo, S., Murphy, T., Dale, R. C., Agalliu, D., Williams, K., Daines, M., Hornig, M., Chugani, H., Sanger, T., Muscal, E., Pasternack, M., Cooperstock, M., Gans, H., Zhang, Y., Cunningham, M., Bernstein, G., Bromberg, R., Willett, T., Brown, K., Farhadian, B., Chang,K., Geller, D., Hernandez, J., Sherr, J., Shaw, R., Latimer, E., Leckman, J., Thienemann, M., PANS PANDAS Consortium (2017) Journal of Child and Adolescent Psychopharmacology. V27(7) pp1-16

Part 3 – Treatment and Prevention of Infection

Cooperstock, M., Swedo, S., Pasternack, M., Murphy, T.; for the PANS PANDAS Consortium (2017) Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Journal of Child and Adolescent Psychopharmacology. V27(7) pp1-13

The PANS PANDAS Steering Group does not recommend any particular guidelines.  However, in the absence of NICE guidelines, if patients want to share the existing international peer-reviewed guidelines with their doctors for them to use at their discretion, they may do so. Please note that there is no current requirement for doctors to follow them.

Glossary

  • ADHD
    Attention Deficit Hyperactivity Disorder
  • AE
    Auto-immune Encephalitis
  • ARFID
    Avoidant Restrictive Food Intake Disorder
  • ASD
    Autism Spectrum Disorder
  • CAMHS
    Child and Adolescent Mental Health Service
  • CBT
    Cognitive Behavioural Therapy
  • Dysgraphia
    difficulty writing by hand
  • EHCP
    Education, Health and Care Plan
  • Emotional Lability
    Rapid, and dramatic changes in mood (for example uncontrollable laughter to crying)
  • Enuresis
    wetting
  • GAS
    Group A Streptococcal infection
  • NHSE
    NHS England
  • NICE
    National Institute for Health and Care Excellence
  • OCD
    Obsessive Compulsive Disorder
  • PP
    PANS PANDAS
  • PPUK
    PANS PANDAS UK
  • PPN
    PANS Physicians Network
  • PPSG
    PANS PANDAS Steering Group
  • SENCo
    Special Educational Needs Coordinator
  • SIGN
    Scottish Intercollegiate Guidelines Network to the glossary
  • Tic
    Sudden repetitive movement (motor tic) or sound (vocal tic) which is difficult or impossible to control