PANDAS/PANS Awareness Day – October 9

PANDASlogoOctober 9 is PANDAS/PANS Awareness Day. The PANDAS Network established the day to increase awareness of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). The Annual Awareness Day began in 2013, and is gaining momentum across the country.

The PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children. A diagnosis of PANS or PANDAS means a child has had a sudden, acute onset in multiple neuropsychiatric symptoms which are caused by a misdirected autoimmune response. Early treatment within the first year of the onset of symptoms helps most children. Untreated, the child often will struggle with lifelong neurological and psychological problems affecting social, medical, educational, and family systems. This fact sheet offers more information and PANDAS/PANS, including diagnostic criteria, testing and treatment options, and resources.

Individuals and families can participate in PANDAS/PANDS Awareness Day by promoting awareness, supporting research, and more. Learn more about PANDAS/PANS Awareness Day, including how you can participate.

More about PANDAS/PANS*

What is PANDAS?

PANDAS occurs when strep triggers a misdirected immune response that results in inflammation on a child’s brain; the child quickly begins to exhibit life-changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.

What is PANS?

PANS occurs when an infectious trigger, environmental factors, or other possible triggers create a misdirected immune response that results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life-changing symptoms such as OCD, severe restrictive eating, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more.

What’s the difference?

PANDAS occurs in the specific instance when strep is connected to the sudden onset of OCD and/or tics along with other listed clinical symptoms. PANS removes the emphasis of the etiologic factor and concentrates on the clinical symptoms. PANS can be triggered by any infectious agent (NOT only strep) in addition to non-infectious triggers which are yet to be fully determined, but may include metabolic disorders and environmental factors. PANS symptoms cannot be explained by any other neurological or medical disorder.

How is PANDAS/PANS diagnosed?

Currently, there is not a definitive test for PANDAS or PANS. It is a clinical diagnosis, and is based on the collection of signs, symptoms, medical history, and laboratory findings. It is not solely based on a diagnostic test such as a blood test.

Tests for PANDAS/PANS may include tests for strep, bacteria and other viruses, an immunological workup, an MRI, an EEG, the Cunningham Panel of tests, and a review of the onset, severity, and duration of symptoms.

Learn more about diagnostic tests on the PANDAS Network website.

What is the treatment for PANDAS/PANS?

Treatment varies based on the child, and can include antibiotics and other medications, cognitive behavioral therapy and counseling, and, in some cases, intravenous immunoglobulin (IVIG) or plasmapheresis.

Learn more about different treatment options on the PANDAS Network website.

What’s the long-term prognosis for children diagnosed with PANDAS/PANS?

PANDAS/PANS are newly-identified illnesses (1998), and there currently is no long-term study on the outcomes of the illnesses, though there are indications that symptoms decline after puberty for many children. Until more is known, parents should continue treatment throughout childhood, and protect their children from contracting strep.

Learn more about the long-term prognosis of children diagnosed with PANDAS/PANS on the PANDAS Network website.

*Source: PANDAS Network © 2015

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