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Caring for infants and children with PI

When a child is diagnosed with a primary immunodeficiency (PI), it can be overwhelming for both the child and their family. IDF has compiled resources and guidance to help children and their caregivers thrive.

Helping your child understand

Depending on your child’s age, there are different techniques to help them understand PI.

Infants and toddlers (ages 0-2)

They are too young to understand their disease, so caregivers should provide comfort and interaction during medical procedures and hospitalizations.

Preschool children (ages 3-4)

They may understand what it means to get sick, but not understand why and how. Caregivers should let them make some decisions, praise them for positive choices, and be firm and consistent with things they do not have a choice over.

School-age children (ages 5-12)

They may have a greater understanding of their disease but may illogically believe they caused it. Caregivers can help by addressing this concern and making sure they know PI isn’t their fault. Caregivers should let them participate in the management of their care and practice procedures on a doll or stuffed teddy bear to relieve anxiety.

Teens (age 13-17)

They want to be more independent, so caregivers should explain the importance of medication even when they feel better, include them in discussions with their medical team, and encourage them to express their emotions through play, art, or other activities. To help lessen frustration and anger over feeling left out, caregivers should also make sure their children can participate in school or other activities whenever possible. As your teenager matures, it's important to start conversations about dating. Dating is a hallmark of adolescence, and speaking to your son or daughter about how to talk about their PI and safety concerns is important. Although rejection is a normal part of dating, and people reject others for all sorts of reasons, reiterate that if someone rejects them because of PI, that person is not the right person for them.

Young adults (age 18-25)

They are ready to self-explore life with separation from their caregivers. They must make choices about education, career, lifestyle, peers, and romantic relationships on their own. You should keep the lines of communication open by being there to offer advice, but your young adult should be making positive choices by staying active and balancing responsibilities themselves. Your young adult still can pursue life goals such as attending college, finding a career, and living independently. They should become knowledgeable about their rights, and understand their strengths and limitations when choosing a career. Finding new providers and facilities is important in the transition if your young adult moves to a new area. Be sure to help them choose healthcare providers who best suit their needs and help them understand insurance implications. 

Adjusting to life with PI

Your child will need your support to adjust to living a full life with PI. Here are some ways you can help.


  • Explain the diagnosis to your child in an age-appropriate manner and encourage them to ask questions.
  • Become informed about medical issues specific to your child, such as infection precautions, use of antibiotics, vaccines, nutrition, dental hygiene, medical alert badge, and genetic counseling.
  • Prepare your child for medical procedures by explaining why they are necessary, who will perform them, what equipment will be used, and whether they may be painful or uncomfortable.
  • Take advantage of child life specialists to help prepare children for hospitalization, surgery, and other medical procedures.


  • Help your child cope with the many emotions they may experience by talking openly about their feelings and providing routine and predictable times to check in with them.
  • Give your child choices to help them feel more in control of their lives.
  • Provide ways for your child to express their emotions, such as through play or art.


  • Teach your child a simple and short explanation of their diagnosis so they are comfortable explaining it to others.
  • Look for role models and connect with others with the same illness, such as through IDF’s support programs.
  • Coordinate with your child’s school to develop a plan to help them keep up with schoolwork and to educate teachers, counselors, and administrators about your child’s condition.

Support for the whole family

A child living with a chronic illness like PI affects the entire family system. Caregivers and siblings can experience a wide range of emotions like worry, stress, anger, guilt, embarrassment, sadness, loneliness, fear, and confusion. There is often less time to spend together, and financial worries may increase.

Families can benefit from the following strategies to relieve stress, share responsibilities, gain support, and explore emotions.

  • Help your child with PI lead as normal a life as possible. It takes a balance of treating them just like any other child while taking into consideration their health and special needs. 
  • Maintain family routines such as wake-up times, mealtimes, bedtimes, regular activities, chores, discipline, etc., to help offset any disruptions experienced due to living with PI.
  • Help your other children cope and feel like important members of the family by having a part in caring for their siblings. Spend individual quality time with each child, and let them know how much they are loved, valued, and appreciated.
  • Carve out time with the whole family to enjoy fun activities that are not focused on the disease.

Advocating for your child

Your child with PI relies on you to be their advocate when it comes to everything from school to healthcare. Learn how you can best support them.


Child sitting on mom's lap with laptop

Additional resources

Whether you are a teen or young adult, or a caregiver to a child living with PI you’ll find articles, videos, podcasts, and more to help deepen your understanding of PI.

For kids

For caregivers


Getting answers can help create peace of mind. Ask us anything, and we’ll consult with experts.

Unfortunately, this is a common issue we see within our PI community. 

If you know your child will be absent more frequently due to their PI, we encourage you to reach out and communicate with the school personnel. Developing a communication and health plan is imperative to determine what accommodations or modifications can be provided for your child to ensure they are keeping up with the course work. 

To better prepare yourself for talking to your child's school personnel and understanding your rights, we've provided additional resources for you. 


Many PI patients within our community report low body temperatures. IDF previously did a fever study; the article is below. Throughout this study, though, the lowest temperature reported was 95 degrees.

IDF: Body Temperature in Patients with PI

NIH: Persons Living with PI Act as Citizen Scientists & Launch Cohort Body Temperature

We would recommend that you follow up with your physician. This person knows your complete health history and will be able to provide the best advice.    

If your physician needs additional information, they are welcome to receive a free physician-to-physician consult regarding your care via the IDF Consulting Immunologist Program

This page contains general medical and/or legal information that cannot be applied safely to any individual case. Medical and/or legal knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical and/or legal advice.

Adapted from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, Sixth Edition 
Copyright ©2019 by Immune Deficiency Foundation, USA