« Living with PI

10 Common School Issues

Your child’s primary immunodeficiency (PI) could impact their education in many ways (e.g., frequent absences, fatigue, activity restrictions). Children’s understanding of their PI disease depends on where they are in terms of their cognitive development. Together, review these common issues.

School staff and community may lack awareness of primary immunodeficiency diseases.

Issue #1: Lack of knowledge and understanding about PI

School staff and community may lack awareness of PI diseases.

Possible Parent and Teacher Response:

  • Learn about PI and share as much as possible with school personnel.
  • Discuss school-related issues with a nurse at the student’s immunologist’s office.
Children may miss school due to illnesses and IgG infusions.

Issue #2: Handling school absences

Children may miss school due to illness and IgG infusions.

Possible Parent and Teacher Response:

  • Develop a plan up front so that the student, parents, and teachers understand what is expected.
  • Take homework home for the child and, if necessary, locate a tutor.
  • If the student is in a children’s hospital, there may be a teacher on staff.
Children�s symptoms and treatment for their primary immunodeficiency disease may change over time

Issue #3: Change in child’s medical condition

It’s important to maintain ongoing communication, since children’s symptoms and treatment for their PI disease may change over time.

Possible Parent and Teacher Response:

  • Parents and teachers should meet regularly to document immunization status, current treatment, emergency contacts, and activity limitations.
The parents and child need to decide if they would like to disclose the PI illness.
It is important to educate the school community that PI is not contagious

Issue #4: Misunderstanding and fear that PI is HIV

Educating the school community about PI can prevent misconceptions, including the fear that the disease may be contagious.

Possible Parent and Teacher Response:

  • The child and parents will need to decide if they would like to disclose the illness.
  • They should also be allowed to decide if they’d like to participate in teaching others about PI.
Preventing infection is important for those living with primary immunodeficieny

Issue #5: Preventing infection

Because children with PI have weakened immune systems, they are likely to acquire infections when exposed to sick children.

Possible Parent and Teacher Response:

  • Ensure that all children wash their hands after using the restroom, sneezing, or coughing.
  • Encourage parents to keep sick children home.
  • Inform parents of children with PI when infectious diseases are prevalent in the class.
  • Ask the parents of the child with PI if there are other precautions the class should observe and work with school administration to identify school-wide precautions.
Primary immunodeficiency and school
Some vaccines can be dangerous for those living with primary immunodeficiency.

Issue #6: Immunizations

People with PI are typically advised to not receive live vaccines such as oral polio or chickenpox (varicella) because of the risk of contracting the disease.1

Possible Parent and Teacher Response:

  • Ensuring that the child not receive vaccinations unless recommended by the doctor treating the child's PI.
  • Parents will need to update school records to reflect changes in immunization status.
Children with primary immunodeficiency may need medication or treatments during the school day

Issue #7: Handling medication use in school

Children with PI disease may need medication or treatments, such as an inhaler or nebulizer, during the school day.

Possible Parent and Teacher Response:

  • Become familiar with the child’s medication(s), dosage, and administration requirements.
  • Provide a private place to administer medications to avoid embarrassment at being singled out.
Children with primary immunodeficiency may need extra classroom accommodations

Issue #8: Classroom accommodations

Children may require modifications to the classroom environment and/or extra time for tutoring and missed schoolwork.

Possible Parent and Teacher Response:

  • Talk with the child and parents about options for missed schoolwork.
  • Follow your school’s procedures for identifying children with learning problems.
The most common issue school officials face related to children with primary immunodeficiency is preventing emergency situations

Issue #9: Emergency situations

This is the most common issue school officials face related to children with chronic illness.

Possible Parent and Teacher Response:

  • Work with school administration to ensure there is an emergency plan in place for the student.
  • Notify parents if the child is exposed to contagious diseases or experiences symptoms, such as high fever or difficulty breathing.
  • Understand and follow your school's procedures for handling emergency medical situations.
Students with primary immunodeficiency may be rejected by peers or develop low self-esteem

Issue #10: Supporting good social relationships and self-esteem

Your student with PI may be rejected by peers or develop low self-esteem.

Possible Parent and Teacher Response:

  • Support the child by not tolerating teasing by other students.
  • Provide necessary accommodations, but emphasize similarities between children.
  • Be respectful of your student’s right to privacy about his/her condition.

Baxter would like to thank Rainbow Babies and Children’s Hospital for sharing this information adapted from 11 Common School Issues, originally published as part of their School Outreach Program for Primary Immune Deficiency, with generous grant support from Caremark, Coram Healthcare, and Schubert Center for Child Development.

Adapted and reprinted with permission of Kimberly Duff, RN, BSN, Baxter Senior Clinical Consultant, and Tonya Palermo, PhD.

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