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What is Pans/Pandas?

Pediatric Acute-onset Neuropsychiatric Syndrome

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections

PANS/PANDAS is a clinical diagnosis and one of exclusion, based on history and examination, not simply one laboratory test.  PANS is thought to result from a variety of disease mechanisms and to have multiple etiologies, including but not limited to psychological trauma, underlying neurological, endocrine, and metabolic disorders or postinfectious autoimmune and neuroinflammatory disorders. Therefore, PANS diagnosis does not require a known trigger. However,  common triggers are infections as well as non-infectious agents. 

Some children suffer debilitating flares while others function enough to continue to go to school but not remotely at the same functioning level. PANS/PANDAS symptoms may relapse and remit. During subsequent flares, symptoms can worsen and new symptoms may manifest. Initial triggers and secondary triggers may vary. Children are often misdiagnosed as having a psychiatric illness thus prescribed only psychotropic medications rather than treated correctly.

The most studied etiology to date is post infectious autoimmunity and neuroinflammation. Accordingly, PANS can have an encephalitic onset as result of an abnormal immune response to common infections like strep, mycoplasma, coxsackie, lyme, epstein barr and more. PANDAS is a subset of PANS and requires a temporal relationship with Group A strep. The antibodies to these infections that normally are created in response to infection mistakenly attack proteins in the brain resulting in neurologic or psychiatric symptoms. A similar process can be seen in Rheumatic Fever, an autoimmune response to Gas A Strep causing carditis, inflammation of the heart.  A recent Autoimmune Encephalitis review paper substantiates that PANS/PANDAS falls under the Autoimmune Encephalitis umbrella in the Infection-associated relapsing remitting CNS Syndrome category. See: “Autoimmune encephalitis in children: clinical phenomenology, therapeutics, and emerging challenges” Dale, R., Gorman, M., Lim, M. – Current Opinion in Neurology Vol30(3):334-344, June 2017.

PANDAS, a subset of PANS, describes cases with a documented association with group A Streptococcus (GAS) infections.  PANDAS is based on 5 criteria including acute abrupt onset of OCD and/or severe tics which are often accompanied by comorbid symptoms seen in PANS. Not all patients present with strep throat. Onset can occur 4-6 months post strep infection if antibiotics did not eliminate the bacteria.

  • Incidence rate is likely to be between 1-2% of the pediatric population. At least 1 in 200 kids have PANS.  Average age of diagnosis is between 4-13 years of age.
  • Nationwide, 33% of children see more than five doctors before being correctly diagnosed.
  • PANS is frequently misdiagnosed as Tourette’s Syndrome, Autism, OCD, bi-polar disorder, ADHD, or Oppositional Defiance, anorexia, but PANDAS/PANS is a distinctly separate condition.
  • It is likely a lifelong condition unless properly treated. Recovery is possible if treated early and appropriately. PANS/PANDAS symptoms may relapse and remit.
  • Attention has been focused on the pediatric population, but adults have also been identified.
  • Not all kids will have all of the symptoms. Severity of symptoms differs from patient to patient. Some children suffer debilitating flares while others function enough to continue to go to school but not remotely at the same functioning level.
  • Diagnosing and treating PANDAS/PANS promptly may help prevent a temporary postinfectious pathological immune response from progressing into a chronic autoimmune condition.

Sudden & acute onset of OCD an/or severely restricted food intake

  • Concurrent severe & abrupt onset of symptoms from at least 2 of the neuropsychiatric categories below:
    • Anxiety, Separation Anxiety
    • Emotional Lability, Depression
    • Aggression, Irritability, Oppositional Behavior
    • Behavioral/Developmental Regression
    • Deterioration of Learning Abilities Related to ADHD
    • Sensory & Motor Abnormalities
    • Somatic Signs: Sleep Disturbances, Enuresis, Urinary Frequency
  • Symptoms not better explained by a known medical or neurological disorder. It is a “diagnosis of exclusion.”
  • There is no age requirement; typically symptoms start during grade school, but post-pubertal cases are not excluded. 

Additional Notes on PANS:

  • Can have motor & phonic tics (e.g., whooping, wringing hands).
  • Can have episodes of extreme anxiety or aggression. 
  • Can have visual or auditory hallucinations identical to the psychotic symptoms seen in conditions such as schizophrenia, bipolar disorder, and lupus cerebritis. 
  • Can have a decline in handwriting & math skills. 
  • Significant OCD and/or debilitating/incapacitating Tic symptoms
  • Pediatric Onset – Symptoms have an evident onset between 3 years of age and puberty, but post pubertal onset is possible. Pediatric onset specified as it is time of peak exposure and cross-species immunity of GAS infections.
  • Acute onset and episodic course: Defined as either a dramatic onset of OCD or tic symptoms or by relapsing-remitting symptoms that erupt with an acute change. Between episodes, symptoms may lesson but not return to pre-syndrome levels.
  • Associated with Streptococcal-A (GABHS) infection. *Note: not all patients will have pharyngitis; strep may be in locations other than throat or patient may be a carrier without active infection. Secondary triggers can be due to exposure to strep or other pathogens.
  • Neurologic abnormalities (motoric hyperactivity, choreiform movement) during symptom exacerbation

Additional Notes on PANDAS: 

  • In conjunction to OCD and/or tics, patients often concurrently experience the comorbid neuropsychiatric symptoms seen in PANS with the same acute and dramatic onset.
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PANS/PANDAS DIagnosis & testing

PANS/PANDAS is a clinical diagnosis and one of exclusion, based on history and examination, not simply laboratory tests. History must show abrupt onset of OCD and concurrent neuropsychiatric symptoms. Other syndromes must be excluded (i.e. general OCD, tic disorders, Sydenham chorea, general anxiety, etc.). Lab tests can show if there has been a preceding infection. Patient need not present with an illness and some patients need only be exposed to a pathogen to be affected.

“Careful consideration of possible inciting infections is important at both the initial onset and symptom exacerbations of PANS or PANDAS. A detailed history of exposures to contagious illnesses should be obtained, with cognizance of their associated incubation periods. Physical examination should focus on infection at any site, including dental, pharyngeal, lymphatic, and perianal and all other skin sites.”

*Reference: Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part III—Treatment and Prevention of Infections – JCAP Vol27, #7, 2017 – Cooperstock, MD, MPH, Swedo, MD, Pasternack, MD, Murphy, MD

  • Strep throat culture, 48 hour culture or perianal culture
  • Bacteria & Virus Blood Work:
    • Anti-Streptolysin O
    • ASO
    • Anti dNase B
    • streptozyme
    • Lyme Disease and co-infections
    • Mycoplasma Pneumonaie
    • Pneumococcal Antibody
    • Epstein Barr Virus Panel
    • Coxsackie A & B Titers
    • HHV-6

Cunningham Panel  autoimmune auto-antibody levels: Dopamine D1 receptor, Dopamine D2L receptor, Lysoganglioside GM1, Tubulin, & CaM Kinase II

  • IgE Level
  • IgA, aIgG, IgM,
  • IgG (subclass 1, 2, 3, 4)
  • CBC
  • ANA
  • Ferretin
  • Serum Copper
  • B-12
  • Vitamin D
  • Plasma Amino Acids
  • Organic Acids

PANS/PANDAS is a clinical diagnosis. The patient’s symptomology is a significant factor in diagnosis.

PANS Rating Scale
Created to quantify obsessions and compulsions in terms of frequency and severity as well as look at associated symptoms. Created by Developed Tanya Murphy, MD and Gail Bernstein, MD. Click for More information.


The severity of PANS/PANDAS varies from patient to patient. Some children suffer debilitating flares, while others function well enough to continue to attend school, but they are not functioning even close to their normal, pre-flare ability.

PANS/PANDAS symptoms may relapse and remit. During subsequent flares, symptoms can worsen, and new symptoms may manifest. Some children do not return to pre-PANS baseline level in between flares; some symptoms clear completely during treatment, while some may take longer to resolve. 

Mild Symptomology

  • Clearly impaired by symptoms in
    some settings, not all.
  • OCD occupies 1-3 hours a day; doesn’t create intractable
    obsessional fear.
  • Able to attend school but with
    persistent separation anxiety.
  • Requires school accommodations.

Moderate Symptomology

  • Anxiety & OCD occupy 50%-70%
    of thoughts & significantly
    interferes with activities.
  • May not be able to attend school.
  • May be able to visit friends
  • Other symptoms impair daily
    functioning but are not

Severe Symptomology

  • Life threatening consequences
    result from severity of symptoms.
  • Dangerous Impulsivity
    Weight Loss (>10-15% of
    body mass) caused by
    anorexia or obsessional food
  • Extreme anxiety and fears
    occupy 80%-90% of the day.
    OCD too severe to attend school.
  • Separation Anxiety too severe to
    be alone and/or leave house
  • Other symptoms (e.g., irritability,
    lability, aggression) can be
    elevated, too.


Treatment guidelines developed by the PANS/PANDAS Research Consortium are now available in the Journal of Child and Adolescent Psychopharmacology. The guidelines address:

  1. Psychiatric medications and behavioral interventions
  2. Antimicrobials
  3. Anti-inflammatory and immunomodulating therapies.

“Treatment of PANS involves a three-pronged approach that utilizes psychiatric medications when appropriate to provide symptomatic relief, antibiotics to eliminate the source of neuroinflammation, and anti-inflammatory and immune modulating therapies to treat disturbances of the immune system. The specific elements chosen for a child’s treatment regimen are influenced by results of the physical examination and laboratory testing, as well as by the course and severity of PANS symptomatology.”

*Reference: “Overview of Treatment of PANS” Swedo, S., Frankovich, J., Murphy, T. – JCAP Vol27, #7, 2017

Each patient’s treatment protocol is influenced by physical examination, laboratory testing and by the course and severity of PANS symptomatology.

Infections must be treated fully; symptoms often begin to improve within one week of antibiotic treatment. However, further interventions are often required to fully heal the underlying causes and alleviate all the symptoms. If treated promptly and thoroughly, symptoms can remit completely. If left untreated and symptoms persist, permanent neurological injury can occur

Set protocol has not been established but often comprised of one or more of the following treatments:

  • 14-day course of B-Lactam Antibiotics
  • Consider 5-15 days of Prednisone
  • Consider IVIG or PEX
  • Consider continued full dose or prophylactic dose of antibiotics
  • CBT and/or counseling for residual OCD
  • Psychotropic medications can be considered if appropriate. Initial dose must but an extremely low amount with a very gradual taper up as needed to avoid activation, agitation, akathisia, and other adverse effects of the drugs.

Other Treatment Options:

  • Antifungals
  • Anti-Inflammatories
  • Antihistamines (H1 & H2 Blockers)
  • Extremely low dose SSRIs, increasing slowly
  • Tonsillectomy and Adenoidectomy
  • ​IVIG, Plasmaphoresis
  • Dietary Changes
  • Vitamin D3, Omegas, etc.
  • Even if the PANS patient shows no obvious signs of infection at diagnosis, a course of antibiotics for strep is suggested.
  • Patients should be monitored and treated for subsequent infections, including but not limited to the flu and sinus infections.
  • Family members and close contacts should be swabbed for strep even if asymptomatic at the time of patient’s initial diagnosis and during exacerbations and treated if positive.
  • PANDAS patients with severe symptoms or recurring strep infections may require prophylactic doses of antibiotics to mitigate risk of neuronal injury.

*Reference: Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part III—Treatment and Prevention of Infections – JCAP Vol27, #7, 2017 – Cooperstock, MD, MPH, Swedo, MD, Pasternack, MD, Murphy, MD

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Obsessive Compulsive Disorder (OCD) is a main criteria of PANS.

For OCD rating scales, please see the following: Yale-Brown Obsessive-Compulsive Scale (Y-BOCS).

Obsessions are unwanted, intrusive thoughts, images or urges that trigger intensely distressing feelings. Compulsions are behaviors an individual engages in to attempt to get rid of the obsessions and/or decrease his or her distress. One may have obsessive thoughts and/or compulsive behaviors during their lifetime but that does not mean they have OCD. In order to be diagnosed with OCD, ones obsessions and compulsions are severe enough to interfere with daily life and interests.
Obsessions are intense repeated thoughts, urges or mental images that cause anxiety and seem beyond ones’ control. People with OCD do not want to have these thoughts and often know they don’t make sense but are often unable to curb them.

Common obsessions include the following:

  • Fear of germs, getting sick, or dying
  • Fear of bad things happening
  • Fear of doing something wrong\Needing things to be “just right”
  • Unwanted thoughts of hurting others
  • Unwanted thoughts of a sexual nature

Compulsions are repeated behaviors or thoughts that a person has the urge to repeat over and over in response to obsessive thoughts. People with OCD use these compulsions as an attempt to offset obsessive thoughts but they only provide a temporary relief. Some compulsions can include avoidance of circumstances that generate obsessions.  Compulsions interfere with daily life and interests.

Common compulsions include the following:

  • Excessive checking/re-checking
  • Excessive washing or cleaning
  • Repeating actions until  “just right”
  • Ordering or arranging things
  • Mental compulsions, praying, reviewing
  • Frequent confessing or apologizing
  • Saying lucky words or numbers
  • Excessive reassurance seeking
  • Hoarding various items

The examples below only represent a small collection of ways children with PANS PANDAS exhibit obsessions and compulsions.

  • Massive anxiety, separation anxiety, anxiety about leaving the house are often related to obsessive thoughts and compulsive actions
  • Obsessive thoughts about food contamination
  • Constantly apologizing for everything and anything even if he/she has nothing to do with a situation
  • Must re-read passages over and over to make sure he/she read it just right
  • Constantly telling parents he/she loves them
  • Needing blankets and pillows adjusted over and over before bed
  • Asking the same question over and over even when he/she clearly understands the answer
  • Needs to cover everything with a blanket before he/she sits on
  • Not able to switch seats in the car Must sit in the same seat every time
  • Repeatedly draws or writes the same thing over and over
  • Constantly taps on objects repeatedly and needing to start from the beginning if one step is done incorrectly
  • Arguing with his sister about the way she’s playing, things she says
  • Ritualistically drying washing and drying hands between each step of the morning/evening bath time ritual
  • Controlling the route to anywhere we go. We can’t veer off the route in the map in his/her head
  • Have intrusive thoughts about losing math skills so he/she constantly reviews math facts that prevent him/her from thinking about anything else (Many kids with PANS PANDAS regress in their math skill ability.)
  • Controlling the actions of others around them (For example: upset when siblings/friends don’t play “just right, when someone spells a word wrong, doesn’t clean their side of the room)
  • Obsessive thought about throwing up
  • Hoarding objects including trash items
  • Holding breath in patterns
  • Looking at hands and/or other body parts in patterns
  • Taking bites of food or sips of drinks in patterns
  • Obsessive thoughts about people coming to harm
  • Intrusive thoughts that he/she will not share with anyone
  • Placing items in a certain order until they are “just right” but “just right” never lasts long and the ritual needs to be repeated
  • Constantly praying
  • Skin picking
  • Severe fears of vomiting; doesn’t want to eat certain foods because worried about throwing them up; often keeps a bucket by his bed in case he has to vomit in the middle of the night
  • Obsessively having to wipe after peeing

OCD can present and interfere at school and/or while doing homework. Often academic accommodations must be made with a 504 plan or an IEP.

Symptoms (in a school setting) include the following:

  • Perfectionism, checking, redoing assignments
  • Constantly erasing paper, erasing through the paper
  • Atypical sloppiness in assignments
  • Unable to complete assignments within one’s capability
  • Arranging items repetitively
  • Reading words over until the sound right
  • Repeating questions after the answer is given
  • Inability to handle change in routine or interruptions
  • Frequent bathroom trips to hand wash or use the toilet
  • Unable to touch other people or their things
  • Unable to allow own items to be touched by others
  • Walking in patterns, counting items
  • Touching or tapping items in a pattern
  • Sitting and standing repeatedly
  • Avoidance of new things

Accommodations might include the following: 


  • Alter work sequence or allow for an alternative schedule if stuck on a section or task
  • ID & substitute less disruptive behaviors
  • Timer to signal transitions
  • If child is continually erasing work, allow computer use
  • Safe space to release compulsions during the day


  • Allow “interrupter” when in a rut (e.g., snapping band on wrist)
  • ID special words/prompts for teacher to interrupt obsessions
  • Goal for curbing repetitive questioning
  • Group Activities: allow separate set of materials
  • Allow for early dismissal from class to avoid crowds in hallways
  • Allow spell check/calculator to be used one time at end in case of anxiety/perfectionism

BEFORE & After Pans: Examples-Visual, Behavioral & Academic cues

It is not always easy to identify if a child has PANS/PANDAS. Knowing the PANS Diagnostic Criteria is a good place to start, but it’s really to consider the whole picture of what’s happening with a child.  It often takes a collaborative effort (from families, doctors, schools, etc.) to identify a child with PANS/PANDAS.

The school picture is an essential part of the entire story. There are no set guidelines for supports and accommodations for students with PANS/PANDAS within the school setting. PANS/PANDAS is not a “one size fits all” medical condition therefore individualized support is required. Most students with PANS/PANDAS are eligible for accommodations and supports under a 504 plan if the medical condition substantially hinders the student’s ability to participate and manage the education curriculum. Individualized Education Plans (IEPs), under the Individuals with Disabilities Act (IDEA), are required for some students with PANS if special education and/or special services are warranted. Every child with PANS/PANDAS has different severity of symptoms and dissimilar symptoms from one student to the next. For most, school is difficult and requires appropriate accommodations and supports.  Some children are too sick to attend school and will require home bound instruction.

*For more information and school-related resources, click here. 




  • Behavioral Regression, a PANS/PANDAS symptom, is shown here by a patient.  You can see the marked difference between the self-portrait during a PANS flare with regression as a symptom and the self-portrait while the child was healing.
  • Handwriting changes, correlate with an increase in neuropsychiatric symptoms. Prior to acute onset of Tics, the student was able to write neatly but after handwriting becomes almost illegible and not neatly placed on the paper.

  • The above two slides are from the NEPANS presentation: PANS/PANDAS IN THE SCHOOL SETTING: From Symptoms to Supports given to School Nurses and Educators.
  • The presentation is available in the School Resources section of our website.
  • Reference: PANDAS in the School Setting by Kathy O’Rourke, MA-School Nurse News-2003
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