What Happened To My Student? Understanding PANDAS/PANS and the Importance of the Family-School Relationship Dr. Lisa Yang, ND Heather Korbmacher, MEd, NBCT

Learning Targets Attendees will gain: 1.a working knowledge of what PANDAS/PANS is and how to identify symptoms 2.an understanding of accommodations necessary to meet the academic, emotional, and behavioral needs of the student 3.an understanding of the supports necessary for the family

PANDAS/PANS An acronym for… PANDAS – Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep PANS – Pediatric Acute-onset Neuropsychiatric Syndrome

Historical Context Dr. Susan Swedo, Chief Pediatrics & Developmental Neuroscience Branch at the NIMH, began researching pediatric OCD in 1986 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, known by the acronym PANDAS, was introduced in 1998

Historical Context cont. In 2012 the research subgroup was expanded to the clinical syndrome known by the acronym PANS In 2015, the JCAP Special Edition is the first collection of research papers on PANDAS/PANS written by a Consortium of researchers and physicians

Difference Between PANDAS and PANS PANDAS is when specifically 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 Other viral or fungal triggers

PANDAS/PANS Explained An infectious trigger, environmental factor, or other possible trigger creates a misdirected immune response Antibodies cross the blood brain barrier and attack the basal ganglia This results in inflammation on a child’s brain 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

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Symptoms Severe separation anxiety (e.g., child can't leave parent's side or needs to sleep on floor next to parent's bed, etc.) Generalized anxiety, which may progress to episodes of panic and a "terror-stricken look" Motoric hyperactivity, abnormal movements, tics and a sense of restlessness Sensory abnormalities, including hyper-sensitivity to light or sounds, distortions of visual perceptions, and occasionally, visual or auditory hallucinations

Symptoms Continued Concentration difficulties, and loss of academic abilities, particularly in math and visual-spatial areas Increased urinary frequency and/or a new onset of bed-wetting Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with thoughts about suicide. Developmental regression, including temper tantrums, "baby talk”, toe walking, and handwriting deterioration (also related to motor symptoms) Episodic course of symptoms

“What happened to my child/student?” Sudden onset, within 24 to 48 hours of trigger Gradual onset, within several weeks to months of trigger Sudden, dramatic change in child’s behavior Listen to parents!

The strep bacteria is a very ancient organism which survives in its human host by hiding from the immune system as long as possible. It does this by putting molecules on its cell wall that look nearly identical to molecules found on the child’s heart, joints, skin and brain tissues. This is called “molecular mimicry” and allows the strep bacteria to evade detection for a time. However, the molecules on the strep bacteria are eventually recognized as foreign to the body and the child’s immune system reacts to them by producing antibodies. Because of the molecular mimicry, the antibodies react not only with the strep molecules, but also with the human host molecules that were mimicked. The cross-reactive antibodies then trigger an immune reaction that “attacks” the mimicked molecules in the child’s heart and causes carditis, or tissues in the brain (particularly the basal ganglia) and causes Sydenham chorea. Studies at the NIMH and elsewhere showed that some cross-reactive “anti-brain” antibodies don’t produce full- blown Sydenham chorea, but instead cause OCD, tics, and the other neuropsychiatric symptoms of PANDAS. labs/pdnb/web.shtml

Diagnosis According to the NIMH, the diagnosis of PANS is a clinical diagnosis, meaning that it depends on a carefully taken history and a physical examination, rather than on laboratory tests 1) Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder, or others 2) Abrupt, dramatic onset of obsessive-compulsive disorder (including severely restricted food intake)

3) Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories: Anxiety (particularly, separation anxiety) Emotional lability (extreme mood swings) and/or depression Irritability, aggression and/or severely oppositional behaviors Behavioral (developmental) regression (examples, talking baby talk, throwing temper tantrums, etc) Deterioration in school performance Sensory or motor abnormalities Somatic signs and symptoms, including sleep disturbances, bedwetting or urinary frequency

Testing options Screening:  Streptococcus titers  Immunoglobulin levels: IgA, IgM, IgG, IgE  Swabs: throat, anal, genital, teeth Cunningham panel: diagnostic for PANDAS Looking for dopamine antibodies, kinase Symptom Scale (pandasnetwork.org) 15

Treatment Options Treat the infection Reduce inflammation Immune support

Treatment Options continued Antibiotics Steroids, NSAIDS, herbal anti-inflammatories Intravenous immunoglobulin- IVIG Low Dose Allergens - LDA Plasmapherisis Symptomatic o CBT o SSRI’s Dietary changes Supplements (mood stabilizers, immune modulators, probiotics) CBD Helminths

Accommodations and Supports 504 or IEP (OHI) Extended time Writing accommodations (keyboard, laptop, specially designed writing tools, graphic organizers) Math accommodations (calculator, manipulatives) Frequent breaks “Safe spaces” to use in the event of behavioral difficulties or acute symptom flares

Accommodations & Supports Cont. Positive behavioral supports and interventions Sensory supports (including occupational therapy when needed) Adapted or modified tasks, particularly those requiring motor control or sustained effort Flexible attendance with advance planning for home and hospital transition as needed Flexible Scheduling

What Else Should I Know? Approximately half of students with PANDAS/PANS are home schooled or receiving home and hospital services due to physical illness, immunocompromised status, or unremitting anxiety Episodes are NOT behavior choices, often the kids are frightened or stressed beyond their control Student needs and performance may vary widely from week to week / day to day. Provide positive behavioral supports and actively work to minimize students’ stress. Stress can increase anxiety and exacerbate symptoms.

What Else Should I Know? Have a plan in place for acute symptom exacerbations as well as day-to-day, less intensive supports. Report outbreaks of illness to parents/ family; students with PANDAS/ PANS may experience symptom increases simply from being exposed to an infection. Report any abrupt changes in behavior, eating habits, or school performance to parents/ families. Students with PANDAS/ PANS may have frequent absences and benefit from strong and proactive teacher communication.

Family Supports Be understanding  Families are experiencing extreme emotional and often financial stress  They are not making this up, their descriptions are real  Parents KNOW their child  This illness is isolating, any time you reach out to the family, they appreciate it

Resources NIMH - labs/pdnb/web.shtml labs/pdnb/web.shtml OCD Foundation PANDAS Network Moleculara Labs - pandas-overview/ pandas-overview/ Journal of Child and Adolescent Psychopharmacology - journal/ journal/