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PANS / PANDAS

What is PANDAS and PANS

A diagnosis of PANDAS and PANS means a child has had a sudden, dramatic change in personality displayed as Obsessive Compulsive Disorder ( OCD) together with accompanying symptoms following a strep, bacterial or viral infection. Particularly in a very young child, OCD can display as intense fears or anxiety. 

Symptoms may show a fluctuation pattern as the child heals, Symptoms often return or worsen when the child gets another infection or is exposed to new illnesses, even if they themselves do not have obvious symptoms like a sore throat or fever. Infections need to be eradicated. Over time, episodes can me more intense. 

Researchers have begun to substantiate that this disease involves a misdirected autoimmune process that affects or weakens the blood brain barrier.

This is an inflammatory process that irritates a region of the brain called the basal ganglia. The basal ganglia are a group of structures that are an important "switching station" in the deepest inner region of the brain. This area manages a variety of functions such as movement, cognitive perception, habit, executive "logic-based" thinking, emotions, and the endocrine system.

The majority of the research has involved the strep throat bacteria, but efforts are being made to identify other known infectious agents. Subsequent episodes can be caused by other environmental and infections triggers different than the original infection.

                  PANS                  

  • An abrupt, acute, dramatic onset of obsessive-compulsive disorder or severely restricted food intake

  • Concurrent presence of additional neuropsychiatric symptoms with similarly severe and acute onset from at least 2 of the following categories:

    • Anxiety

    • Emotional Lability and/or Depression

    • Irritability, Aggression, and/or Severe Oppositional Behaviors

    • Behavioral (Developmental) Regression

    • Sudden Deterioration in School Performance

    • Motor or Sensory Abnormalities

    • Somatic Signs and Symptoms, including Sleep Disturbances, Enuresis, or Urinary Frequency

  • Symptoms are not better explained by a known neurologic or medical disorder

  • Age requirement – None

The onset of PANS may start with infectious agents other than strep. It also includes onset from environmental triggers or immune dysfunction. 

PANDAS

Clinical diagnosis of PANDAS includes 5 criteria:

  • Presence of significant obsession, compulsions and/or tics

  • Abrupt onset of symptoms or a relapsing-remitting course of symptom severity

  • Prepubescent onset

  • Association with streptococcal infection

  • Association with other neuropsychiatric symptom (includes any of the PANS "accompanying" symptoms

JCAP 2017 Guildlines for Treating PANS/PADAS Volume 27 ISSUE 7: Published Online: 1 Sep 2017 https://doi.org/10.1089/cap.2016.0145

Testing and Treatment

PANDAS and PANS are clinical diagnosis. Your provider may find the following  tests helpful:

  • Strep throat swab and 48 hour culture

  • Bloodwork to test for strep (strep ASO, Anti-Dnase B, and Streptozymes)

  • Tests to check for othr infections

  • The Cunningham Panel

The Cunningham Panel is a test used in the assessment of difficult PANDAS/PANS cases. "The collective results of the panel of 5 tests will provide an assessment as to the anti-neuronal and autoimmune state of the patient at the time of testing."

Treatment varies by the needs of each child. Your provider may prescribe of suggest the following:

  • Antibiotics or anti-virals

  • Steroids

  • Intravenous Immunoglobulin (IVIG)

  • Plasmapherisis (PEX)

  • Therapy such as CBT (Cognitive Behavioral Therapy)

  • NSAID's (Non-Steroidal Anti-inflammatory Drugs)

1 IN 200 CHILDREN MAY HAVE PANDAS/PANS

PANDAS/PANS Prevalence

  • A conservative estimate is 1 in 200 children in the U.S. alone. However, the true lifetime prevalence of PANDAS/PANS is not known.* 

  • The statistical relevance is equal to Pediatric Cancer., Pediatric Diabetes I and II., and ALS³. The healthy outcome of a child’s life can be seriously affected, but research and treatment for PANDAS/PANS is scarce.

How do we determine the estimated lifetime prevalence of PANDAS/PANS for children 18 and under?

  • Approximately 500,000 children are diagnosed with OCD in U.S.⁴

  • Approximately 138,000 children are diagnosed with Tourette Syndrome in the U.S.⁵

  • 1.5 million+ children were diagnosed with serious anxiety/phobia/OCD/bipolar in a given year (1994-2011)⁶

  • “Dr. Swedo estimates that (PANDAS) kids may make up as much as 25 percent of children diagnosed with OCD and tic disorders, such as Tourette syndrome.”⁷

*The estimated prevalence is based on PANDAS Network research.

PANDAS/PANS Population Analysis Based on 700 family self-reports

AGE OF ONSET

  • 1 to 3 years 11%

  • 4 to 9 years 69%

  • 10 to 13 years 19%

  • 14+ years 1%

PRIMARY SYMPTOMS

  • OCD 37%

  • TICS 14%

  • BOTH 49%

INFECTIONS REPORTED

  • Strep 81%

  • Other 19%

(Mycoplasma, Lyme, etc.)

        ARTICLES

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Citations

¹KantarHealth, CancerMPact Patient metrics U.S., accessed June 28, 2012

²National Diabetes Information Clearinghouse/NDIC (information as of 2010); http://1.usa.gov/LfNKrk

³ALS Association (information as of 2011); http://bit.ly/nRR94U

⁴IOCDF.org; http://bit.ly/rimFAb

⁵CDC.gov; http://1.usa.gov/MoghKH

⁶Centers for Disease Control and Prevention. Mental health surveillance among children - United States 2005–2011. MMWR 2013;62(Suppl; May 16, 2013):1-35.

⁷Scientific American: From Throat to Mind: Strep Today, Anxiety Later? (2010); http://bit.ly/5ro0mv

⁸Swedo et al (1998) PANDAS: Clinical Description of the First 50 Cases; http://ajp.psychiatryonline.org/data/Journals/AJP/3685/264.pdf

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