PI and Your School

Primary Immunodeficiency (PI) and School

A positive learning environment is important to your child’s happiness and success.

Providing a good education is one of the joys of being a parent. But if your child has a primary immunodeficiency (PI) disease, you may find you need to do a little independent study and set up some meetings to discuss your child’s needs.

Do Your Homework

The IDF School Guide: Information about Students with Primary Immunodeficiency Diseases is a great place to begin your research. This guide is a valuable reference for parents and school personnel, including administrators, teachers, and nurses. It contains key medical points about primary immune deficiency diseases and associated special needs, legal rights of children with chronic disease, and resource referrals.

Private, Public, or Homeschool

Some families may feel that homeschooling is the best option, given their child’s special requirements. Others find their children thrive in a private or public school setting with some modifications. It’s important to note that regulations that apply to private and public schools may differ, depending on what state you live in.

Accommodations for Kids with Primary Immunodeficiency

To create the best learning environment for your child, some modifications may be necessary. For example, you may need to insure that your child will always have access to a bathroom or be able to use waterless hand soap as needed. For a list of possible accommodations and modifications, based on your child’s specific type of primary immunodeficiency, see the IDF School Guide.

Steps to Take Prior to Going to School

School rules around medications and attendance policies have made it more complicated for chronically ill children and their parents. Check the school’s policies, make a list of questions you have for your school, and take notes on information you receive. Here are some things to ask:

• Will the school need a doctor’s letter about your child’s illness or medical records?
• How many absences can be excused with a note from parents?
• When is a note from the doctor required?
• Is there a maximum number of absences allowed without risking a failing grade?
• What is the school’s policy regarding taking medications at school? Can children keep over-the-counter or prescription medications with them for IVIG side effects?
• If the child must leave medications with someone, who is it and what are their qualifications?
• Who is the back-up if this person is unavailable?
• Where are medications stored and how long will it take to get them?
• What are the labeling and other requirements for sending medications to school?
• Will physical education affect your child’s health? What arrangements should be made?

A Letter from Your Doctor

Once you have gathered all the specifics from the school, request a letter from your child’s treating physician to describe the child’s diagnosis and treatment plan. The letter may include:

• Restrictions on immunizations and/or exposure to contagious illnesses
• Post-infusion medications which may be needed at school (drug, dose, timing, potential side effects, and condition treated – for over-the-counter and prescription medications)
• Recommendations for indoor/outdoor recess
• How to handle your child’s illness at school

School Contacts

Parents need to sign a release form to allow the hospital/physician’s office and the school to communicate about their child’s health. Your liaison with the school may be a hospital social worker, nurse, psychologist, or even the principal.

• Decide if issues should be handled via phone, letter, or in person.
• Be sure your child has an up-to-date medical ID and wears it.
• Make copies for the teacher of any communications sent to your school.
• Explain to your child how to ask for medication if needed.
• Be sure your child understands testing, treatment, and when to ask someone to call you.

Additional Resources

Band-Aides and Blackboards helps people understand what it’s like to grow up with medical problems.

10 Warning Signs of Primary Immune Deficiency poster and pocket guide created by the Jeffrey Modell Foundation.

Download a sample letter for your school nurse.