School Resources
PANS/PANDAS in schools
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.
These school resource pages are designed to assist teachers, school nurses, administration and parents. More materials are being created so please check back often.
School Resources
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Therapy can be instrumental in negotiating exacerbation, but doing so requires a paradigm shift. Children often lose skills during exacerbation, and traditional remedial intervention may be ineffective. Greater benefit may be found with adaptation and compensation for problems during exacerbation, followed by remediation of ongoing problems during remission.
-PANDAS: A New Frontier for Occupational Therapy Intervention - Janice Tona & Trudy Posner
PANS/PANDAS in a School Setting
PANS/PANDAS diagnostic criteria includes OCD and/or Severe Food Restrictions along with 2 of the following: Anxiety, Emotional Lability, Aggression, Behavioral/Developmental Regression, Deterioration of Learning Abilities, Sensory and Motor Abnormalities, and Somatic Signs.
- How do those symptoms present at school?
- What accommodations and supports can be implemented to make school accessible?
- 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.
Individualized Healthcare plans
School Nurses and Educators often see symptoms and manifestations of PANS that are not seen at home as is vice versa. They are in a unique position to identify abrupt changes, new symptoms or behaviors previously overlooked, which can be a crucial part of the diagnostic criteria. Continual dialogue is needed between educators, school nurses, and parents to help the student participate meaningfully in school.
Some students will need Individual Health Care Plans (IHCPs) to ensure health and safety needs are met.
Individual Health Care Plans (IHCP) for students with PANS are an integral part of promoting success in the school environment. IHCPs foster communication between all members of the school team: Parents, Student, School Staff and School Nurse. Students with chronic and complex healthcare needs, such as PANS, often necessitate specialized care at school to ensure their health and safety is supported so the student can be successful. IHCPs are created for students whose health needs affect their daily functioning and their ability to access the school curriculum. This usually includes students who are medically fragile, require complex health care support, need frequent contacts with a school nurse, and/or have health care needs addressed on a daily basis.
“An individualized health care plan is a detailed and orderly program of action designed to monitor, prevent, reduce or eliminate identified health problems in order to maintain or improve a student’s health status and level of wellness and to promote his or her learning and positive coping. The process of planning requires a team approach and includes the establishment of care priorities, a clear understanding of student specific goals, prescription of appropriate interventions, and delineation of measurements for goal achievement.” – National Association of School Nurses, 2008
The School Nurse with the collaboration of health care providers, parents and school staff, develops IHCPs. The team should consider supports needed during the entire school day, including the classroom, physical education, the school bus, field trips, and extracurricular activities. IHCPs will often require frequent updating as changes in the child’s medical condition and needs occur. You can request an IEP or Section 504 Plan meeting at any time to address your concerns.
“Health care plans identify solutions for diagnosed health problems (actual or potential); communicate the student’s specific health needs, and the prescribed nursing and collaborative interventions for directing and evaluating the care given; and provide a mechanism for demonstrating accountability.” – Clinical Procedure Guidelines for Connecticut School Nurse
“RI Rules And Regulations For School Health Program
1.30 “Individualized health care plan (IHCP) “means a comprehensive plan for care of children with special health care needs developed by the certified school nurse teacher in collaboration with the student, parents/guardians, school staff, community, and health care provider(s), as appropriate.” – RI DOE: Rules and Regulations for School Health Program
An IHCP may be developed by the school nurse as a standalone document or as part of the IEP or the Section 504 Plan to specifically address the student’s medical needs in the school setting. PANS is a medical condition; it is not a behavioral condition. Therefore a Behavioral Intervention Plan (BIP) should not be used in place of an IHCP. Students however may have both a BIP and an IHCP if appropriate. To put this in perspective, a student with Diabetes is not given a behavioral plan to address consequences due to low blood sugar.
A well-written IHCP will:
- Ensure that the school has relevant information and authorization.
- Address both family and school concerns.
- Clarify roles and responsibilities.
- Establish a basis for ongoing teamwork, communication, & evaluation.
NASN
IHP: Role of the School Nurse
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Connecticut
SDECT – Clinical Procedure Guidelines for Connecticut School Nurses – Individual Health Care Plan
This covers what an IHCP Plan is, why it is needed and what elements need to be included.
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Guidelines for Managing Life-threatening Food Allergies in CT Schools
Although this link is not PANS specific, it does provide a good example of what must be included.
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Massachusetts
Mass Gov – Health & Human Services – IHCP
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Maine
Maine Department of Ed – Individual Health Plans Guide
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New Hampshire
NH Dept of Ed Health Care Plan Templates
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Rhode Island
Rhode Island Department of Ed
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PANS/PANDAS RESources for SChool Nurses
- Is It PANS, CANS, or PANDAS? Neuropsychiatric Pediatric Disorders That Are Not Black and White–Implications for the School Nurse
Kathy Bagian, MSN, RN, CSN, Sheila Q. Hartung, PhD, RN (NASN-2015)
Article Abstract - PANDAS in the School Setting
Kathy O’Rourke, MA (School Nurse News-2003)
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PANS/PANDAS RESources for psychologists
None of the links worked for any of this information; I can take it out, or you can add more articles.
PANS/PANDAS RESources for Neuro-psychologists
Infection Induced Encephalopathy: Cognitive and Sensory Impairments
Dr. Judith G. Leventhal, PhD.
- Neurocognitive Functioning in Youth With Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcus –Adam B. Lewin, Ph.D., A.B.P.P.; Eric A. Storch, Ph.D.; P. Jane Mutch, Ph.D.; Tanya K. Murphy, M.D. (Journal of Neuropsychiatry-2011)
Full Article
PANS/PANDAS RESources for SLPs
Additional Resources
Students with PANS are medically fragile. As such, students with PANS may be absent from school more than 9 times a year. Therefore, when absences are medically necessary, they can obtain excused medical absences from their doctor and should not be counted as truant. Some students will be absent sporadically while others will need to be absent from school for longer period of times. The School Nurse, staff, parent, medical doctor should collaborate to determine plans for frequent but sporadic missed days as well as extended absences. Please note that under some circumstances extended absences will require Home Bound instruction.
Connecticut
- CT SDE – Excused Absences Guidelines
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Maine
- Maine DOE – Chapter 128-Truants & Dropouts-Guidelines
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Massachusetts
- MASS DESE-Attendance and Dropout Reporting Guidelines
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New Hampshire
- NH DOE Technical Advisory-Truancy
Contact
Rhode Island
- RI BOE – Compulsory Attendance
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Vermont
- Vermont Agency of Education-Excused Absences Defined
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Students with PANS are medically fragile. As such, students with PANS may be absent for extended periods of time and may require Home Bound instruction. Home Bound Instruction is considered the most restrictive placement. Students with PANS may require this placement when a) they are too sick to attend school for extended periods b) require a non-infections environment that the school can’t provide. Instruction is designed to ensure the continuity of educational services between school and home placement. The goal is to facilitate the return to the school setting, as it is a temporary placement.
Connecticut
The CT SDE adopted new regulations, which went into effect on July 1, 2013.
All school nurses, school medical advisors and school personnel should be aware of the new language and requirements of the regulations.
- CT SDE – Subject Matter Of Regulation: Special Education
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Massachusetts
- Mass Dept of Elementary and Secondary Education
Question and Answer Guide on the Implementation of Educational Services in the Home or Hospital – 603 CMR 28.03(3)(c) and 28.04(4)
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Maine
- Maine Unified Special Education Regulation Birth to Age Twenty
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New Hampshire
- NH DOE – Ed 1111.05 Home Instruction for School-Aged Children
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Rhode Island
- RI BOE Regulations Governing The Education of Children with Disabilities-300.115(C) Continuum of special education program placement: home bound and hospital instructional programs
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Vermont
- Vermont Agency of Education – 1252 Instruction for Home bound and Hospitalized Students
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- Special Education Law
Read more at Wrightslaw - IEPs – From Start to Finish
Read more at Understood - Difference between IEP & 504 plans
Read more at Understood - 504 Plans: 5 Common Pitfalls
Read more at Understood - 10 Defusing Phrases to Use at IEP Meetings
Read more at Understood - Tips for Parents
Read more at Special Ed Justice - What is Child Find?
Read more at Wrightslaw - The Child Find Mandate: What Does It Mean to You?
Read more at Wrightslaw - Child Find: What It Is and How It Works
Read more at Understood
Connecticut Resources
- Materials & Publications
Read more at Connecticut Parent Advocacy Center – CPAC - Special Education Law
Read more at CT Law Help - A Parent’s Guide to SPED in CT Read more at CT State Dept of Ed
Massachusetts Resources
- A Parent’s Guide to Special Education
Read more at The Federation for Children with Special Needs & The Massachusetts Department of Education - Special Education Parent Information
Read more at Massachusetts Department of Education
Rhode Island Resources
- Rhode Island Parent Information Network
Read more at RIPIN - Special Education Regulations
Read more at Rhode Island Department of Education
- How Lyme Affects Their Learning
Read more from Lyme Disease Association - How Lyme Affects Their Learning
Read More from Lyme Disease.org - Identifying Lyme in Schools
Read more from Lyme Disease Association - In Services Ideas for Lyme
Read more from Lyme Disease Association - Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients
Read more from Lyme Times - Lyme Disease and Cognitive Impairments by Robert Bransfield, M.D.
Read more from Mental Health and Illness - A Controlled Study of Cognitive Deficits in Children With Chronic Lyme Disease
Read more from Lyme Disease Association - Gifted Students and Lyme Disease: What Educators, Counselors, and Parents Need to Know by Patricia A. Schuler
Read more from Gifted Child Today
- A resource for school personal
OCD Education Station - Imprisoned in Rituals: Unlocking the Gates of OCD
Cherlene S.M. Pedrick, RN, Diana Harland, BS, CCR
Course Description
PDF
- Tics And Tourette’s Syndrome: An Overview
Read More at SchoolBehavior.com - Teaching Children with Tourette Syndrome
Read more at ERIC Digest - Tourette Education Help
Read More at Tourette Syndrome Association
- 40 Accommodation ideas for students with ADHD
Read ADDitudeMag.com - At a Glance: Classroom Accommodations for ADHD
Read more at Understood - Teacher Helpline: How How Can I Help to Refocus a Student With ADHD?
Read more at We Are Teachers - Top ADD/ADHD Accommodations
Read more at Promoting Success - Implementing Executive Functioning strategies in your IEP
Read more at A Day In Our Shoe - Executive Functioning IEP Goals for ADHD and Organization
Read more at Learning Abled Kids - Sample IEP Goals that address Executive Functioning
Read more at No Guile: Life and Other Stories from Autism - Leading IEP Champion: Strategies to Improve Executive Functioning (EF)
Read more at Global Genes
Would you like for NEPANS to come speak to your school or to your group?
NEPANS has held numerous meetings with school nurse organizations; we have met with over 250 school nurses, and we are scheduling more and more consultations every year.