Dr. Jamie Candelaria-Greene PhD, BCET:From Crayons to College: PANDAS/PANS in the School Setting

©Dr. Jamie Candelaria-Greene 2012
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From Crayons to College: PANDAS/PANS in the School Setting

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Considerations Regarding Academic Accommodations/Compensatory Strategies, and Services for Students with PANDAS/PANS


(Supplementary Handout)
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Dr. Jamie Candelaria-Greene PhD, BCET, Alameda, California

PANDAS PARENTS SYMPOSIUM Burlingame, California April 28, 2012

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Getting Started : What is the General Process of Obtaining Special Education Services in the US?


In the US, under Section 504, most students with a medical condition (such as PANS) will be eligible to obtain accommodations (such as extended time on tests etc.) without an Individualized Educational Plan (IEP). It needs to be recognized only that the medical condition (PANS) substantially hinders the student's ability to participate in, and/or keep up with the regular education curriculum.

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However, if special services or special education is warranted (even for a short period of time per week), one goes through the following steps under what is called the Individuals with Disabilities Act (IDEA):
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  • Referral/Notification (Even if parents speak to school staff personally or by telephone, notification by letter will be helpful in establishing time lines for follow-up meetings and services. These time lines are defined under the procedural safeguards related to IDEA. The letter should include information regarding parental concerns re: PANS, and the effect it may have on their child's school performance.
  • Planning and Placement Team Process (determines the need for- and type- of evaluations- see next page.)
  • Evaluations (If the team decides on the need for more evaluations, these take place in efforts to guide decisions on obtaining special education and related services. Even without additional testing, however, the primary disabling condition of Other Health Impairment (OHI) should provide for accommodations to take place under Section 504.
  • Eligibility (The team uses the results of testing, which of course include outside testing, as well as input from treating physicians, behavioral health professionals, and others, to determine types of special education services needed/allowed under law.)
  • Individualized Educational Plan (If the child is found eligible for services special education and/ or related services must be implemented within a given time from the initial date of Referral (above).
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Student Study Team Planning and Testing Considerations

  • Collaboration with Treating Physician/Medical Provider to determine the nature of the illness, and to learn how this condition would affect the child's work/ stamina at school.
  • Academic Portfolio of work, and testing the student has completed (in the past, and under the constraints of the illness).
  • Age of the Child (Generally the younger the child, the more useful and critical testing will be in terms of guiding treatment and providing educational services from the school district, which may include Speech Therapy and Occupational Therapy etc.. Very generally speaking, older children (in college, for example) will primarily need a doctors diagnosis of PANS to allow for accommodations in college.)
  • Stamina Levels for School and for Testing Sessions (The child may have limited cognitive and/or physical stamina to complete long batteries of testing, which may also affect the validity of testing results).
  • Financial Resources
  • Outside Testing (Binocular vision clinics, etc. - The results and recommendations from outside testing would at least "get the ball rolling," in terms of providing 504 accommodations at the very least, and should lead into a discussion of special education services for the school team.)
  • How is testing going to guide or provide services? (The question must be " How would these testing results inform a discussion of how my child can better keep up with the regular education curriculum- to the best of his/her ability?".)
  • Testing as a Transitional Glimpse. (It must be acknowledged by all parties that dips in performance are associated with the illness, but that the long term trajectory is good. Also, what provisions will there be for follow up testing as symptoms improve?)
  • Little Likelihood of 'Specific Learning Disability" (Most children with PANS -at this point in time anyway- will not qualify for special education services under "Specific learning disability" because their achievement scores in reading, writing, and arithmetic, etc., will be "too high.")
  • Emphasis on OHI as the Primary Disabling Condition. (In most cases, the "learning disability" is symptomatic (and secondary) to PANS. Our children do need services, and they qualify under OHI.)
  • Close Collaboration with Medical/Mental Health to support and work with staff and student.

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Areas of Testing Most Relevant to PANDAS/PANS (In other words- What areas are getting in the way of our children keeping up with their regular education school curriculum?)

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  • Fine Motor/Visual Motor/ (usually conducted by an occupational therapist)
  • Visual Processing (acuity, tracking, closure, etc.)
  • Auditory Processing/ Language Processing
  • Memory Skills Visual and Auditory- (separately, together, and sustained)
  • Executive Functioning Skills (attention, planning, self-monitoring)
  • Sensory Integration/Sensory Defensiveness (tactile, visual, auditory and olfactory: The team has to know how to recognize certain triggers that will result in sensory overwhelm for the child; the team then has to put a plan in place to mitigate triggers or help the child accordingly. )
  • Adaptive PE/Gross Motor/Recreational (Don't forget what is happening on the playground.)
  • Functional Behavior Assessment Social/Emotional Development
  • Psychiatric referrals (AB 3632? Some legislation provides opportunities to receive these off campus)
  • Assistive Technology (How could computer software etc. aid them academically?
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Organizational Support

  • Preferential/assigned seating (up front on the side/opposite dominant ear)
  • Use of assignment notebook planner/ Daily Assignment Sheets, Lists/use of school websites
  • Projects Broken down use of mnemonics (i.e. HOW)
  • Leaving classes/last class of the day early
  • Discreet use of Cues/prompts of what’s needed next (School staffs must be mindful of not drawing attention to this child's difficulties, particularly amongst his or her peers.)
  • Home/school communication system, Special education check-in with child and parents
  • Extra set of School books at home; Color coding books materials; Extra supplies available.
  • Structured classroom: organize distraction-free study areas at home/school work carrels
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Attentional Supports

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  • Organizational Support
  • Directions, short, concise written if possible
  • Ear phones blocking out distracting stimuli
  • Use of study carrels
  • Positive feedback for what they are doing right
  • Too much attentional support/praise is TMI and may be overwhelming for our children.
  • Check in with teacher/ student/parent by SPED to determine waxing/ waning levels of attention and adjust/accommodate accordingly; Opportunities for breaks and movement when needed
  • May be secondary to poor stamina, listening skills

Behavioral Supports

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  • Consider /Acknowledge/document waxing/waning nature of behaviors during the day, and over weeks and months as illness regresses and heal
  • For Tic Symptoms- Testing modifications, providing refuges, breaks, and when necessary, brainstorming the management of socially inappropriate behaviors, educating others regarding tics/PANDAS/Tourettes Syndrome (SEE SITES RE: Tourette Syndrome Association)
  • For Obsessive Compulsive Symptoms- Assess the nature of behavior (what, when, where) and brainstorm possible solutions; allow transition time between activities; consider modifications re: attendance
  • For Sensory Overwhelm, Storms/Tsunamis, Meltdowns Avoiding information overload (TMI) (visual, auditory, movement, etc.);Structure in Learning Environment; Extra Time to Transition; Organizational Help/Emergency plan; Removing Layers of Sensory Input (light, sound, movement); Diffuse…Diffuse… Diffuse; Liaison at School (Counselor, Behavioral Health Provider, Nurse, or Guidance Services); Collaboration with Community Mental Health Provider
Considerations for Behavioral Health Providers:
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  •  Identifying Triggers (Determining what precipitates/exacerbates sensory overwhelm, OCD, tic, or other unexpected behaviors, as a step towards treatment or behavioral management.
  •  Guidance to Family Members on Diffusing Storms/Melt Downs. What is the emergency plan for both home and school? Who is/are the best person/people/entity to help the child get the child back to a 'calm place' again/? If a 'melt down' does takes place, who is the best person to take on the role of leadership in directing others? If applicable, guide family and school staff in reducing layers of sensory overload.
  • Cognitive Behavioral Therapy (Take into account limitations from regressed levels of executive function (planning, self-monitoring, etc.) Also encourage/facilitate self-calming strategies to better allow for CBT to take place.)
  • OCD Behaviors as Moving Targets (Behaviors may remit or change as illness wanes and waxes).
  • Differences in Medication Response from non-PANs. (Our children tend to be more sensitive to certain neuropsychiatric medications than their non-PANS peers.)
  • Acknowledgement of Crumbling Paradigms (Treatment protocols that may have worked successfully with non- PANS children with similar conditions may not be as successful with individuals with PANS. Also, remission of some behaviors may not be entirely due to behavioral health interventions, but to medical treatment received, i.e. IVIG or antibiotics.)
  • R/O Post Traumatic Stress Syndrome for all family members over time.
  • Recognition of Different Perspectives as valid (influenced by cultural, developmental, gender, health issues, etc.)
  • HIPPA Considerations (Facilitate or guide family/care giver in having/getting access to child's records, even if the child is an adult.) (Thanks to Dr. Mary Candelaria, Psy.D., Clinical Psychologist, Bellevue, WA, for her collaboration on the section above.)
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Sensory Supports

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  • Auditory overload or distraction: including the use of carpeting, lowered ceilings, tennis balls on chair legs, acoustical tiles, P.A. systems muted or turned off, headphones, etc.
  • Visual overload or distraction: including the use of muted colors in working areas, the use of blinds, curtains, reduction of visual clutter.
  • Awareness of olfactory and tactile stressors
  • OT/PT and Adaptive PE recommendations for helping propioceptive, tactile, and vestibular challenges (hypo/hyper).

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Memory Supports

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  • Reduce stress/anxiety/distractions as much as possible.
  • Direct instruction to student in memory aids such as mnemonics i.e..PAR (Picture it, Associate it, Review it)
  • Repetition/ review; repeat directions back to instructor
  • Teach only as much as they can handle at one time adding only one more bit of information. •
  • Present new information in a meaningful context
  • Help them identify personal strengths and weaknesses in memorizing as illness waxes and wanes.
  • Use calculator, math facts sheets, digital tape recorder, smart pens, lists etc.

Gross Motor Supports and Considerations


  • Emphasis on as much movement as stamina will allow. Emphasis on crossing midline.
  • Adaptive PE/physical therapy to promote and facilitate as much movement and ease of gross motor skills/games as possible through waxing/waning.
  • Opportunities to exercise during the day to mitigate hyperactivity/agitation.
  •  Assistance/monitoring on field trips, negotiating new terrain, monitoring student’s stamina/hydration
  • Sufficient and proactive playground supervision to promote fairness and access to physical activity, and recreational sports.


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Fine Motor Supports


  • Extended time for all projects involving writing.
  • Use of word processor, note taker, recording equipment, use of graph paper.
  • Shorten long assignments; every other item, etc.
  • Use of oral responses, scribe, or recorder for tests.
  • Raised lined paper, Handwriting without Tears
  • Use of voice recognition Software
  • The importance of an Assistive Technology workup
  • Occupational therapy (inc. sensory integration, Brain Gym, etc.)
  • Musical Instruments when stamina allows

Speech and Language

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  • Speech Therapy w/articulation
  • R/o auditory sensitivities/sensory overloads
  • Listening activities (ear to voice/Sensory Integration)
  • Social Language Groups
  • OT /or Speech therapy to improve (or manage) hypersalivation, dysfluency, and tic related utterances/movements
  • Teach the child appropriate phrases; role play
  • Music Therapy
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Math Supports

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  • Sharing Data validating extra time for tests (requiring memory, fluency, fine motor, attention)
  • Training in the use of graph paper, weighted pencils, computer programs, assistive technology (in the use of Book Share, Livescribe Echo Smart Pen, etc.)
  •  Shortened assignments, dictated responses, mnemonics, (GEMDAS) Order of Operations (grouping, ex², ×, ÷, add, sub)
  • Use of Math Facts, Formula Sheets, and Calculators when this knowledge is not the primary purpose of test.
  • Teacher-directed, where teacher models procedures and checks for understanding before moving on.
  • One to one tutoring as needed. Review steps. Manipulatives use may be difficult because of poor visual motor skills.
  • Self questioning and self monitoring strategies with each step prompted and checked by student (use of summary charts and checklists, that student checks off as they do their work)
  • Track Math scores as much as possible. NEVER decide on advancement/retainment of math level based on one or two data points.
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Reading and Literacy Supports

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  • Assistive Technology (in the use of Book Share /Dragon Dictate/ Kurzweil Programs, Livescribe Echo Smart Pen)
  • Extra time to process texts, tests, homework projects, etc.
  • The accommodation to write directly on test protocol (as opposed to a transfer sheet) Shortened assignments, allow dictated responses
  • Eliminate crosswords, Hangman or other “fun” puzzle type assignments that require sustained amounts of fine motor, memory and visual processing
  • Mnemonics (e.g. SQ3R (Survey, Question, Read, Recite, Review) HOW (Heading, Organization, Writing)
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Health Supports

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  • Involve school nurse, parents, teachers, and staff.
  • Re-evaluate/update/periodically. Develop health care and emergency plan.
  • If necessary, modify attendance policy.
  • Establish health alert - every staff member involved with this student is aware of the health problem and of proper procedures. Make available homebound services/instruction.
  • Begin a disability awareness program as per parent and student request.
  • Provide school counseling.
  • Arrange for trained personnel on school field trips. Provide assignments to hospital/ school. Schedule periodic home-school meetings.
  • Arrange for student to leave class early to get to next class. Excuse from or adapt physical education program.
  • Provide an interactive system - computer, e-mall, T.V.
  • Provide peer assistance for social involvement (keep child informed of social activities).
  • Furnish life-skill assistance (The Above Health Supports taken from Davis Unified Farmington Utah from 504/IDEA comparisons).
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Helpful Websites

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  • Pandasnetwork.org; Latitudes on Line; Tourette Syndrome Association; CHADD sites (ADHD/ Executive Function); The American Occupational Association; Assn. of Educational Therapy; Brain Gym; Sensory Integration Therapy sites (Auditory Integration and Therapy, etc.)
  • California Department of Education/Special Education, Special Education Local Planning Agency; (Federal information) www.k12.wa.us/SpecialEd/pubdocs/PS.pdf Disability Rights California 1(800) 504-5800
  • California Children's Services; Regional Centers of California (Intake Coordinator of The East Bay (510) 383-1312)
  • Univ. of Cal. Binocular Vision Dept. providing evaluation for binocular vision and visual perception (510) 642-2020
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About the Speaker:

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Dr. Candelaria-Greene received her Ph.D. from UC Berkeley. As an educator, she has served students with special needs from every age and developmental level. Dr. Candelaria-Greene's work as a researcher, teacher, and professor of Special Education has spanned thirty years and three continents. Her writing focuses attention on effective educational practices, literacy, and the effects of health conditions and the environment on learning ability. In her private practice, she provides educational assessments, academic support for adults re-entering education, and multi-sensory readiness skills for children at risk.
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Selected Research for this Presentation:

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1. Kirvan CA, Swedo SE, Snider LA, Cunningham MW. Antibody-mediated neuronal cell signaling in behavior and movement disorders. J Neuroimmunol. 179(1-2):173-9. 2006; Epub 2006.
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2. Swedo S (2002). "Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS)" (PDF). Mol Psychiatry. 7 Suppl 2 (s2): S24–5. doi:10.1038/sj.mp.4001170. PMID 12142939. http://www.nature.com/mp/journal/v7/n2s/pdf/4001170a.pdf.
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3. Snider LA, Swedo SE. (2004) PANDAS: Current Status and Directions for Research. Mol Psychiatry. Oct;9(10):900-7.
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4. Robinson R (2008) "New Roles for the Basal Ganglia in Learning and Memory Neurology Today 17 July 2008; Volume 8(14); p 24
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5. Swedo SE, Leckman JF Rose NR (2012) From Research Subgroup to Clinical Syndrome Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) Pediatric s and Therapeutics 2:113
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6. Swedo S, Leonard HL, Garvey M, et al.(1998) Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: Clinical description of the first 50 cases. Am J Psychiatry. 155:264-271.
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7. Kirvan CA, Swedo SE, Kurahara D, Cunningham MW. Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea. Autoimmunity. 39(1):21-9. 2006.
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8. Snider LA, Lougee L, Slattery M, Grant P, Swedo SE. Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders. Biol Psychiatry. 57(7):788-92. 2005.
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9. Perlmutter SJ, Leitman SF, Garvey MA et al. Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood. Lancet. 354(9185):1153-8. 1999.
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10. Hirschtritt ME, Hammond CJ, Luckenbaugh D, Buhle J, Thurm AE, Casey BJ, Swedo SE. Executive and attention functioning among children in the PANDAS subgroup (2009) Child Neuropsychol. Mar;15(2):179-94. Epub 2008 Jul 11.
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11. Hong C, Press LJ, Visual Factors in Childhood Behavioral Disorders retrieved at http://www.visionhelp.com/vh_06.html
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12. Steele M M, Steele JW Teaching Algebra to Students with Learning Disabilities. Mathematics Teacher, 96(9) Dec 2003
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13. Murphy, T, Storch, E, et al. (2011) Personality Changes Clinical Factors Associated with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections The Journal of Pediatrics www.jpeds.com
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14. Swedo, S.E., Leonard, H , Rapoport, J. L. The Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection (PANDAS) Subgroup: Separating Fact From Fiction Pediatrics Vol. 113 no4 April pp. 97-1097
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15. Swedo, Leonard, Garvey ET AL (1998) Pediatric autoimmune neuropsychiatric Disorders American Journal Of Psychiatry 155:2 February
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16. Ben-Sasson A, Carter AS, Briggs-Gowan MJ. (2010) The development of sensory over-responsivity from infancy to elementary school Journal of Abnormal Psychology.
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17. Ben-Sasson A, Carter AS, Briggs-Gowan MJ (2009) Sensory over-responsivity in elementary school: prevalence and social-emotional correlates Journal of Abnormal Psychology.
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18. Davies PL, Gavin WJ (2007) Validating the diagnosis of sensory processing disorders using EEG technology American Journal of Occupational Therapy 61, 176-189.
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Bolded articles specific to Sensory Integration.


Printable pdf of this handout can be found here.
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