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.

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School Resources

Click on the tabs below to find out more.

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: AnxietyEmotional 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.

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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
Read More
 
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.
Read More
 
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.
Read More
 
Massachusetts
Mass Gov – Health & Human Services – IHCP
Read More
 
Maine
Maine Department of Ed – Individual Health Plans Guide
Read More
 
New Hampshire
NH Dept of Ed Health Care Plan Templates
Read More

Rhode Island
Rhode Island Department of Ed
Read More

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)
    Read More
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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.

Watch on YouTube 

  • 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
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PANS/PANDAS RESources for SLPs

  • Effects of PANDAS/PANS on Communication: What SLPs Need to Know
    by Kelly Ward, MS, CCC-SLP and Jessica Edelstein, MA, CCC-SLP 🙂
  • READ HERE

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
    Read More

Maine

  • Maine DOE – Chapter 128-Truants & Dropouts-Guidelines
    Read More

Massachusetts

  • MASS DESE-Attendance and Dropout Reporting Guidelines
    Read More

New Hampshire

  • NH DOE Technical Advisory-Truancy
    Contact

Rhode Island

Vermont

  • Vermont Agency of Education-Excused Absences Defined
    Read More

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
    Read More

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)
    Read More

Maine

  • Maine Unified Special Education Regulation Birth to Age Twenty
    Read More

New Hampshire

  • NH DOE – Ed 1111.05 Home Instruction for School-Aged Children
    Read More

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
    Read More

Vermont

  • Vermont Agency of Education – 1252 Instruction for Home bound and Hospitalized Students
    Read More

Connecticut Resources

Massachusetts Resources

Rhode Island Resources

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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.