Susan Swedo, M.D. discusses research findings on causes, symptoms, and treatments for PANS/PANDAS. She highlights the differences in syndromes and diseases and discusses the diagnosis and clinical presentation of PANS/PANDAS, asserting that comorbidities are the rule, not the exception. Dr. Swedo also details the disease pathway and historical links of OCD and Sydenham Chorea to PANDAS and affirms its recognition as a form of autoimmune encephalitis.

In this presentation 

7:40 – Clinical criteria for PANS

10:14 – Clinical criteria for PANDAS

15:55 – Relationship of PANDAS to OCD and Sydenham Chorea: 

28:40 – PANDAS as autoimmune encephalitis

53:00 – Question and Answer

Summary

PANS/PANDAS is a subtype of pediatric OCD affecting up to 5% of children with a diagnosis. Comorbid traits of PANS/PANDAS overlap substantially with those of autism. However, unlike autism, symptoms associated with PANS/PANDAS occur abruptly and in concert with each other (8:30). Although OCD is a common comorbid trait of autism, few children with autism meet the criteria for PANS/PANDAS (6:08)

While PANS is a group of symptoms without a determined cause (syndrome) (7:05), PANDAS is a disorder that has an identified trigger and disease pathway (7:20). PANDAS is caused by exposure to Group A Streptococci (10:14), or strep throat, which triggers a misdirected immune response in children with genetic susceptibility; this leads to brain inflammation (19:00), effectively making PANDAS a form of autoimmune encephalitis (28:44). PANS/PANDAS present with similar symptoms and require a differential diagnosis, meaning the symptoms cannot be better explained by any other known medical or neurological disorder (12:03).

The average age of onset is 7 or 8, though it can be diagnosed in children from ages 3 to 12 (11:05). Those with a family history of rheumatic fever or OCD have higher diagnosis rates across all socio-demographic groups (11:50). PANS/PANDAS first present with an abrupt onset of OCD or Anorexia coupled with an acute onset of at least two of seven signs (8:00)

  • Anxiety
  • Behavioral development regression
  • Emotional liability or depression
  • Irritability aggression or severally oppositional behavior
  • Deterioration in school performance
  • Sensory or motor abnormalities
  • Somatic signs/symptoms, especially insomnia or urinary symptoms

On average, children diagnosed with PANDAS will exhibit symptoms from five of these seven categories (21:18). Diagnosis often includes laboratory tests, sleep studies, comprehensive family history (primarily genetic factors), and physical exams, noting pupil dilation or involuntary movements. Physicians may also test for strep, depending on how recent the onset is during the first visit (38:38)

The presenter emphasizes that treatments should focus on three points: (42:30) 

  • Treat the source by preventing and quickly treating bacterial infections (43:37)
  • Treat the symptoms via cognitive behavior therapies and/or psychotropic medications – It is important to ensure the administering physician has a history of treating OCD in adults or children (50:02).  
  • Treat the immune system with immunomodulatory therapies – note that this is only really useful when combined with other treatment techniques (45:06).

Management of PANS/PANDAS can be accomplished via doses of melatonin or Benadryl and long-acting anxiolytic medications. Support and behavior therapy for parents is recommended even before a child begins treatment (50:51).

Sue Swedo, M.D.

Susan Swedo, M.D. is formerly the Chief of Pediatrics & Developmental Neuroscience Branch at the NIMH. Dr. Swedo and her NIMH team were the first to identify a new subtype of pediatric OCD, in which symptoms are triggered by cross-reactive antibodies produced in response to infections with Group A beta-hemolytic streptococci. The subgroup is known by the acronym, PANDAS, which stands for: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. This work led to the development of several novel therapies, including use of intravenous immunoglobulin (IVIG) and plasmapheresis to treat acutely ill children, and antibiotics prophylaxis to prevent strep-triggered neuropsychiatric exacerbations. Subsequent work has revealed that the cross-reactive antibodies are unique to the PANDAS subgroup and have biologic activity in the CNS. Learn more

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