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Parenting Children With PI

Caring for a child is always full of successes and challenges, and when primary immunodeficiency (PI) is involved, it can affect many areas of your life. From what your child needs to know to what your child’s school needs to know, there are several things you’ll want to take into consideration.

Trust yourself and your instincts. Nobody cares more about your child than you do.

Dawn, mother of an 11-year-old son with PI

What Your Child Needs to Know

When your child has PI, it’s important to help them build gradual independence and confidence in caring for their own health. No one knows how you feel better than you, and that goes for your child as well. Help them to grow in their healthcare management by gradually granting independence and responsibilities—with your guidance—as they get older.

Children as young as elementary school-aged should begin to learn vital information about their own healthcare treatment, such as their Ig infusion brand and dosage. You should also encourage and teach them to share how they are feeling and to ask questions directly to their healthcare team.

For older children, you may want to grant increasing responsibilities, such as scheduling doctor appointments, learning to fill their own prescriptions, or learning how to prepare or administer their treatment, if applicable.

In general, you should help your child understand their PI, in age-appropriate ways, so that they can feel more in control of their situation.

Talking to Doctors

You can help children communicate better with their healthcare teams by teaching them the "AEIOUs" of talking to their doctor:

  • Ask: Ask questions, in a respectful manner, directly to their doctor.
  • Explain: Tell their doctor about anything they may be feeling, and be honest when explaining.
  • Information: Doctors are experts, so ask them for information.
  • Organize: Plan out what they want to talk about with the doctor before the appointment, and maybe take notes during the appointment.
  • Understand: Make sure they understand exactly what the doctor is asking of them when they leave the appointment.

School Considerations

Communicating with your child’s school and being informed about your child’s legal rights are the most important parts to a successful school experience.

IDF School Guide

The Immune Deficiency Foundation’s free publication, IDF School Guide: Information about Students with Primary Immunodeficiency Diseases is a valuable and comprehensive resource for parents and school personnel. It offers in-depth information about PI diseases, associated special needs, legal rights, and more.

Learn more or access the IDF School Guide here.

Accommodations/Modifications

In order to create the best learning environment for your child, accommodations and modifications may be implemented. An accommodation means changing the school setting or environment, while a modification means changing the work in some way.1

Some examples of accommodations and modifications that may be made for your child include:

  • Allowing your child to bring a water bottle to school so he or she always has access to water
  • Special restroom privileges for your child
  • Changing assignments or due dates in case of extra absences from school
  • Not taking away participation points for days a child was absent due to illness
  • Providing an additional set of textbooks, one for school and one for home

See the IDF School Guide for more about accommodations and modifications, and talk to your child’s school about ways to ensure your child has the best educational experience possible.

Legal Rights

There are numerous laws enacted to help students whose learning may be impacted by a health condition. Students with primary immunodeficiency are protected under these laws. The links below help explain them, and how they apply to you and your family.

Another useful resource, a downloadable guide titled Students with Chronic Illnesses: Guidance for Families, Schools, and Students, created by the
National Institutes of Health (NIH), can help everyone involved understand their part. It lists responsibilities for schools, families, and even students themselves.

Letters to School Staff and Other Parents

You can send a letter to school staff and to other parents at your child’s school. These letters should help to explain primary immunodeficiency, and what you need from others to help your child manage his or her PI. For example, you may ask that school staff and other parents alert you of any serious illnesses that may be going around the school, or that their children may have contracted.

Remember that our Patient Advocates, from MyIgSource, are real patients and caregivers who may have been through this process themselves. You can talk to them as part of the program. Joining MyIgSource is free, and it’s easy to enroll now.

More Resources for Parents

MyIgSource offers lots of resources to help support you and your family on your journey with PI. To see the resources available, visit our Support Resources page.

You can also find more information specifically for parents on our companion site, ImmuneDisease.com.

Reference: 1. Immune Deficiency Foundation. IDF School Guide Information about Students with Primary Immunodeficiency Diseases. Towson, MD: Immune Deficiency Foundation; 2009.

    

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