General Curriculum Access for
Students with PANDAS/PANS
Council for Exceptional Children
2017 Annual Convention
Presenters
Emily Klein, M.Ed., Rhode Island State Department of Education
Amy Mazur, Ed.D., Educational Consultant
Gabriella True, B.A., President, NE PANS/PANDAS Association
Patricia Rice Doran, Ed.D., Towson University
Objectives
● List and describe symptoms of PANDAS/PANS and related
disorders
● Identify physical, academic, and behavioral challenges
commonly encountered by children with neurological
disorders in accessing the general curriculum
● Describe strategies to facilitate access to the curriculum
at the classroom, school, district and state levels.
PANDAS/PANS Overview
PANS/PANDAS is a misdirected immune response, often with an encephalitic
onset, which negatively affects neurologic functioning, resulting in a rapid, acute
onset of OCD, and/or restricted food intake along with at least two additional
neuropsychiatric symptoms:
● Deterioration in school
● Anxiety/Separation Anxiety
performance
● Emotional Lability and/or
● Sensory or motor abnormalities
Depression
● Somatic symptoms, including
● Irritability, Aggression, Oppositional
sleep disturbances, enuresis or
Behavior
urinary frequency
● Behavioral/Developmental
Regression
PANDAS/PANS Overview
Diagnosis:
● A clinical diagnosis and one of exclusion, based on history & examination
● PANS diagnosis does not require a known trigger.
● Triggers can be strep or other pathogens like mycoplasma, coxsackie, Lyme,
Epstein-Barr and more as well as non-infectious (environmental, allergic, etc.)
agents.
● PANS/PANDAS symptoms may relapse and remit.
General Information:
● 1 in 200 students estimated to have PANDAS.
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Average age of diagnosis is between ages 4-13.
Symptoms are relapsing and remitting.
Not all kids will have all of the symptoms.
It is a treatable autoimmune disorder. Recovery is possible if treated early and
appropriately.
Not all symptoms manifest at school.
Children often work extremely hard to cover up symptoms at school.
PANDAS/PANS Overview
● You’ve met one child with PANS… You have met one child with PANS
● It is essentially a spectrum disorder. Mild, Moderate, Severe. All levels
require accommodations.
○ Mild – OCD -1-3 hours a day, Not incapacitated with fear. Able to
attend school with accommodations. Persistent Separation Anxiety
○ Moderate – OCD 50-70% of the day. May be able to go one place but
not another. Daily functioning is impaired but not incapacitating.
○ Severe – OCD 80-90% of their day, Danger to themselves (impulsivity
or food restriction), separation anxiety too severe to leave house.
These are the kids who are on home health care or fully homeschooled
PANDAS/PANS Overview
Related Disorders
You have seen all the symptoms separately but probably not all together.
● OCD & Tics disorders - Typically Develop Gradually vs Sudden Onset
● Autism - Sudden onset can be missed as people assume they are “just part of the Autism”.
● ADHD - If they did not have ADHD prior, then their symptoms that look like ADHD will more than
likely not be helped by typical ADHD meds.
Two Subsets in School
Students with an Existing IEP/504
New or Worse behaviors - need to be accommodated. Need plan for relapse and remit of
symptoms.
Don’t dismiss as “just the ADHD” or “just the Autism”
Students without an Existing IEP/504
● State of shock for family.
● Know nothing about SPED. They don’t even know how many sick days they are allowed.
PANDAS/PANS Overview
Examples - Before and After Onset
Before - 10th Grade
● easygoing
● always been a good student
● many friends
● takes mostly honors classes
● excellent in math
Following the flu suddenly developed
● eye blinking tics
● erratic behavior
● anxious
● argumentative
● suicidal, resulting in hospitalization….
● missed relatively easy questions on math
tests.
● developed obsessions - pacing, setting the
volume button on electronics to multiples of
5, and having everything “just so.”
PANDAS/PANS Overview
Examples - Before and After Onset
4 year old with attention and
behavior difficulties.
● mild visual perceptual and fine
motor issues, but no sensory
processing problems.
● began occupational therapy
Later
● refused to don his socks and complained
that the waistband of his pants hurt.
● demonstrated regression in drawing
● no longer able to write the letters of his
name legibly.
PANDAS/PANS Overview
Examples - Before and After Onset
A second-grade student
● studious
● industrious
● no issues at school
● independant worker
After Contracting Strep
● hyperactive
● disorganized
● unable to remain seated
● unable to resist calling out
● unable to complete simple tasks by
himself
PANDAS/PANS Overview
Examples - Before and After Onset
A third-grade girl
● no recent trauma, supportive
family
● many friends
● no identified social problems.
● easy going kid
● loved school
● not overwhelmed by schoolwork
Post Strep Infection
● acutely school phobic.
● intensely anxious every morning
● refused to get on the school bus, had to
be driven to school. She crouched in the
car, sobbing and clinging to the seat.
PANDAS/PANS Overview
Examples - Before and After Onset
During Flare
During Treatment
Images Credit: Susan E. Swedo, M.D. Pediatrics & Developmental Neuroscience Branch NIMH, NIH Intramural Program
PANDAS/PANS Overview
Examples - Before and After Onset
Before Onset
During Flare
Images Credit: Susan E. Swedo, M.D. Pediatrics & Developmental Neuroscience Branch NIMH, NIH Intramural Program
Impact on Functioning
Covers multiple domains: cognitive/ academic, sensory/motor, social/ behavioral
BEHAVIORAL Symptoms
•Obsessive Compulsive Disorder
•Obsessive Thinking (Inappropriate
Thoughts/Rigid Thinking/Perfectionism)
•Eating Issues (Limited Menu/Fear of
Choking/Anorexia)
•Anxiety (Separation Anxiety/School Refusal)
•Aggression (Defiance/Rages)
•Age Regression/Immaturity (Tantrums/“Baby
Talk”)
•ADHD (Fidgeting/Outbursts/Poor Impulse
Control)
•Sensory Issues
ACADEMIC Symptoms
•Loss of Math Skills
•Decline in Handwriting Skills (Dysgraphia)
•Unable to Make Simple Decisions
•Poor Short-Term Memory
•Decline in Creative Work (Art, Creative Writing)
•Avoidance of High Sensory Environments (Art,
Music, Cafeteria, Physical Ed, etc…)
•Loss of Focus on a Single Task
•Work Refusal (School Work/Homework/Writing
Assignments)
•Perfectionism (Erasing through paper, Needing
to start over)
Impact on Functioning
Covers multiple domains: cognitive/ academic, sensory/motor, social/ behavioral
PHYSICAL Symptoms
•Tics (Motor/Vocal)
•Eye Issues (Dilated Pupils, Vision Issues,
Hallucinations)
•Eating Issues (Limited Menu/Fear of
Choking/Anorexia)
•Frequent Urination (Trips to the Bathroom)
•Unusual Gait
•Balance Issues
•Chapped Hands or Lips/Mouth
•Trichotillomania (Hair Pulling/Skin Picking)
•Enuresis
EXECUTIVE FUNCTION Symptoms
•Difficulty with Working Memory and Holding
Information
•Poor Organizational Skills
•Time Management Issues
•Difficulty Planning/Prioritizing Attention on a
Single Task
Difficulty Making Decisions
Facilitating access to curriculum
Common barriers:
Attendance (illness and “school refusal” or school phobia)
Processing, executive function, impact on cognition
Sensory and motor issues
Behavioral challenges (including rage, OCD/anxiety and “fight or flight”)
Attendance
In one qualitative study, 50% of children with PANDAS/PANS spent time on home
instruction or were moved to homeschool/ home and hospital permanently
Challenges with attendance may include increased number of medical absences,
increased fatigue, and separation anxiety
“School refusal” or phobia of school, sometimes associated with separation anxiety
or OCD, is common
Cognition
Children with PANDAS/PANS frequently present with difficulties in writing, math
and executive functioning.
Visual-spatial deficits (Murphy et al, 2012) and executive functioning challenges
(Dale et al, 2017) have been reported in the literature.
Additional cognitive-academic impact may occur as a result of missed instruction
due to illness/ attendance
Sensory and motor abnormalities
Sensory hyper or hypo sensitivity
Fine motor challenges (handwriting)
Tics (motor/ vocal--may be mistaken as “behaviors”)
Hyperactivity
Socio-emotional/ behavioral
Frequent anxiety (including separation anxiety from familiar people or places)
OCD-may present as “refusal” to complete tasks, perseveration on tasks, or fixation
on routines or rituals
ADHD/ hyperactivity and impulsivity
Rage and tantrum behaviors
Fight or flight mode-heightened responses
COMMON PANDAS MYTH
“If the student is back in school, it is fair to assume he can function according to
classroom academic and behavioral demands, expectations and routines as
required.”
THIS IS NOT THE CASE
Recovery for PANS/Pandas is not a straight uphill trajectory.
Big challenge for teachers to differentiate behavior that is
within a student’s control and that which is neurologically
based and is not in his/her control.
TEACHERS MUST HAVE WIDE REPERTOIRE OF INSTRUCTIONAL
STRATEGIES
What works for one student may not work for the next.
What works for the one student may not be needed consistently and
May not work again when he/she does need the next accommodation.
**ACCOMODATIONS DO NOT ALTER THE CURRICULUM CONTENT BUT
PROVIDE ACCESS TO THAT CONTENT
Seven Skill Areas to Consider when Planning Classroom
Adaptations/Accommodations (Candelaria-Greene, 2015)
1.
Fine motor skill/visual motor integration
2. Visual Processing
3. Receptive language including auditory processing
4. Expressive language
5. Visual and auditory memory
6. Executive functioning skills
7. Sensory integration
BEHAVIORS THAT MAY INDICATE A FLARE
1.Difficulty organizing self, thoughts and materials
2.Challenges with transitions
3.Difficulty completing tasks
4.Gut related symptoms, anxieties or disorders
5. Difficulty focusing
6.Increase in headaches, fatigue, or joint pain.
ACCOMMODATIONS CONSIDER 4 AREAS:
1. Presentation of materials: What modality?
2. Setting for instruction and assessment: group or individual activity, consider
visual and auditory distractions
3. Timing: includes provision for breaks, pacing, extended time
4. Response method: provide alternate ways by which student can show mastery of
subject matter
DEVELOPMENTAL DEMANDS FROM PRESCHOOL TO HIGH SCHOOL
Some supports are generalized across grade levels but others build on
each other.
Pre-school level: Plan to decrease separation anxiety by use of
transition toy or blanket, display of family pictures. Minimize visual
distractions and choices to be made. Provide designated cubby and
seating area to facilitate organizational success.
Elementary School Level: Increased need for
organizational skills as class size expends; assignments
demand listening, speaking and writing responses;
students are responsible for keeping track of their own
materials, increased in class transitions during the day
make readiness to begin a begin a task more difficult.
Middle School Level: Need to navigate throughout a
larger building several times a day without getting lost;
timely arrival from one class to the next; access
to/provision of books and other instructional materials
used in five to six classes per day; ability to adjust to
differing expectations of multiple teachers and subject
areas.
High School Level: Increased demand for
independent learning, choices and planning occurs
across subject areas; student has responsibility to
seek help when needed; need to develop self
advocacy skills and to negotiate many new peers
as he/she moves from class to class.
Facilitating curriculum access: Schoolwide strategies
Staff knowledge and professional development
Collaboration with providers
Team composition and process
Flexibility in attendance and curriculum
Staff knowledge and PD
Initial meeting with all teachers of affected student/s
Basic information provided to teachers for awareness purposes
Continued information sharing as medical situations change
Collaboration with providers
Often complex cases involving multiple medical or therapeutic providers
Provider input and access, when facilitated by parents/ families, can be quite
helpful
May be useful for providers to review behavior plans to ensure symptoms (tics, etc.)
have not been mischaracterized as behaviors
Team composition and process
Parent
Providers or outside personnel invited by parent
School nurse
Counselor/ school psych/ therapist
OT/PT/speech
General and special educator
Student if appropriate in terms of age and functioning
Flexibility in attendance and curriculum
Functioning may change rapidly.
Appropriate placement and setting may need to be modified.
Attendance should include provisions for frequent absences (medical
appointments, health issues, etc.), late arrival, early dismissal, additional breaks due
to fatigue, etc.
Consider increased attendance flexibility during winter months--frequent exposure
to ill peers may limit utility of school.
District strategies and approaches
➔Give school teams authority to heighten and rapidly intensify supports when
sudden medical changes cause acuity in symptoms.
◆ Hallmark of PANS/PANDAS to go from honor roll to multiple daily living challenges in just days
or hours. Schools must move quickly.
➔Facilitate access to tutoring for any child with a medical condition as part of
general education and also in connection to IEP or 504 where appropriate.
➔Explore flexible, hybrid supports weaving together partial school day
schedules, online learning, and in home tutoring during times of acute flare up.
◆ Provided gradual re-entry to school support where necessary
➔Build in movement and brain breaks to Tier 1 academic learning as an
District strategies and approaches
➔Promote successful attendance in a positive manner
◆ That is appropriate to the individual student’s health needs
◆ Through a school problem solving process with families rather than applying harsh punitive
measures such as truancy
◆ Encourage or require building leadership to intercept tardy and attendance warning letters and
replace with supportive communication practices such as phone calls and team meetings.
➔Examine how Extended School Year (ESY) through the IEP process or Title I
summer learning programs can help children with high absence from illness
close gaps.
◆ Are school teams using these options to support students?
District strategies and approaches
➔Provide and/or promote general education staff training on the faces of OCD
and anxiety in school age children and need for medical treatment in this
particular disorder
➔Provide district-wide training to school nurses & school psychologists at a
minimum
◆ OTs and speech language therapists + guidance/school counselors at the middle/high school
➔Require school nurses to send out informational notices about the impact of
illness such as strep especially when a known exposure in certain classes or
grade levels has occurred.
◆ This does not violate privacy laws when the notice names no students and opens with a
generic statement such as, “Your child may have been exposed to strep throat.”
Statewide approaches/ policies
➔Share resources for awareness and supports with statewide networks
◆ School nurses
◆ School psychologists and social workers
◆ Special education directors
◆ Parent training and information centers
◆ Preservice preparation programs for school psychology and special education
◆ Department of Health
➔Embed information and awareness into statewide training
Questions/ Comments?
Contact info:
Emily Klein: [email protected]
Amy Mazur: [email protected]
Patricia Rice Doran: [email protected]
Gabriella True: [email protected]