what happened to my student? understanding pandas/pans and the importance of the family-school...
TRANSCRIPT
What Happened To My Student?
Understanding PANDAS/PANS and the Importance of the Family-School Relationship
Dr. Lisa Yang, NDHeather Korbmacher, MEd, NBCT
Learning TargetsAttendees 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/PANSAn 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
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!
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 CBTo 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 - http://
www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml
• OCD Foundation - https://kids.iocdf.org/what-is-ocd/pandas/
• PANDAS Network - http://pandasnetwork.org/
• Moleculara Labs - http://www.moleculeralabs.com/pans-and-pandas-overview/
• Journal of Child and Adolescent Psychopharmacology - http://www.moleculeralabs.com/silver-journal/