Caring for children and teens

For babies and toddlers, a PI diagnosis can affect development beyond symptoms alone. Discomfort, frequent medical visits, and changes in daily routines can affect their sleep, feeding, mobility, and sense of security. Consistent caregiving, comfort, and predictable routines when possible play an important role in supporting healthy development during this stage.

When children are this age, try to have a parent or caregiver they trust with them when they see healthcare providers or are in the hospital. Objects that make them feel better, like a pacifier, blanket, or favorite toy, can help lessen distress. Gentle touch, play, and reassurance are important sources of comfort. For toddlers, try to keep their routines the same and let them make simple choices (like "Do you want the blue blanket or the green blanket?") to help them feel like they have some control.

Preschoolers are becoming more independent and want to make choices. They understand what it means to be sick but often don’t understand why or how they get sick. Hospital stays and taking medicine regularly may make them feel like they have less freedom and can lead to frustration.

Preschoolers are learning independence and often test limits as a way to feel in control. Be firm and consistent with things that can't change, like taking medicine and going to the doctor. When possible, offer simple this-or-that choices, like putting on a mask in the car or at the door or using a red or blue bandage, to give them a sense of control. Notice and praise the child when they cooperate.

Avoid making promises you can’t keep. Saying there will be no needle pokes or blood draws can break trust if plans change. Simple, honest explanations work best at this age.

Children in this age range are getting better at feeling like they can control what happens around them. They are better able to understand their condition, but they may still not understand why they have PI. They may think they caused their PI because of something they did. Also, children at this age start to notice differences between themselves and their friends and may feel sad, angry, worried, or alone.

Caregivers can help by explaining to children that PI is not their fault and that they did not do anything to cause it. Have open conversations about how they feel. Letting children talk about their experiences, and listening without rushing to fix things, can be very comforting. Encourage them to name and share their feelings.

Giving children small roles in their care can also help them feel more in control. For example, encourage the child to keep a list of questions for their next medical visit or have them help keep track of when they need to take medication.

Medical play can be helpful for some children. Let the child act out medical procedures on a doll or stuffed animal with a toy medical kit, like taking its temperature or blood pressure. Allow them to practice things like shots, blood draws, and infusions to help them work through fears in a safe way [1]. Let the child lead the play while you follow along.

The tween and teen years are a time of big changes in body, feelings, and relationships. As your child gets older, they will start taking more responsibility for managing their PI. This transition can be hard for both kids and caregivers, but it’s a key step toward long-term health and independence.

During these years, school, friends, and activities become very important. Tweens and teens want to be more independent and make their own choices. This is normal, but a chronic condition like PI can make it tricky to find a balance between staying healthy and pursuing daily life.

You can support your child by slowly teaching them how to take care of themselves and handle problems. Open conversations are important—ask what they understand, how they feel, and what questions they have. Studies show that teens who are involved in their healthcare decisions are more likely to stick to their treatment plan and feel confident managing their health [2]. While caregivers are responsible for giving legal consent for medical care, your child’s assent, or agreement to and understanding of care, is also important [3].

It's typical for teenagers with chronic conditions to feel frustrated, annoyed, or lonely, especially if they miss out on activities or feel different from their friends. Some may avoid taking their medications or getting treatments, especially when they feel well or want to fit in. When this happens, calm, honest discussions are more effective than punishment. Explain how following their treatment plan—like getting regular immunoglobulin replacement infusions—helps them stay well enough to be active and independent.

Whenever you can, let your teenager join you in planning their medical care. Encourage them to write down questions before appointments and talk directly to their healthcare team. Slowly give them more responsibility, allowing them to handle new tasks like keeping track of symptoms, asking for prescription refills, or managing health needs at school [4].

As your teenager gets older, their treatment plan may need to change to fit their lifestyle. This could mean adjusting medical appointment or treatment schedules, switching the type of treatment they get, or learning to self-administer treatments. Work with their healthcare providers to find solutions that protect your teenager's health while helping them become more independent.

Most importantly, keep talking openly. Teens who feel respected and supported—not controlled—are more likely to share their concerns and stay engaged in their care. Over time, your job changes from managing everything to guiding your child toward taking care of themselves, helping teens move toward adulthood with confidence [4].

Caregivers are very important members of the healthcare team for a child with PI. You observe changes from day to day, notice how your child responds to treatment, and share what you see, which helps guide decisions. Hospitals and professional groups encourage care that focuses on the patient and their family. They invite families to take part during meetings with healthcare providers, ask questions, and help create plans. This approach has been shown to lead to better understanding, communication, and safety [5].

More than one provider will likely be involved in caring for your child, so keeping complete and accurate records of their medical care is very important. In addition, you are your child’s main advocate during any medical visit, including hospital stays, trips to urgent care or the emergency room, and home health visits.

• Ask questions if you don’t understand what a healthcare provider is telling you.
• Take notes or record appointments, with permission.
• Make sure healthcare providers and non-medical staff who are not familiar with your child’s health history understand their needs.
• Speak up if a healthcare provider is not following safety or infection prevention procedures.
• When your child is old enough, encourage healthcare providers to speak to them directly.

Understand the basics of your child's condition and treatments and when to contact the healthcare team. Knowing this information helps you notice important signs, make confident choices, and teach your child about their condition as they get older. Your child’s healthcare provider, patient organizations like the Immune Deficiency Foundation, and support groups can help you understand your child’s specific PI. If your child has a type of PI with a known genetic cause, a genetic counselor can help you understand what your child’s diagnosis may mean for other family members and how their condition is passed down. This can help with family planning and future medical care.

Learning about common health and lifestyle issues related to PI helps you and your child make safe choices. Concentrate on taking sensible steps to prevent illness. Making small, common sense changes helps kids take part in activities safely while keeping them healthy in body and mind. Talk about these topics often with them, their healthcare providers, and other household members.

• Preventing infections: Know what to do to stay safe from infections at school, sleepovers, camps, and when traveling. This includes washing hands well, avoiding crowds, and wearing a mask when needed.
• Staying safe outdoors: Learn how to lower the risk of infection when swimming, gardening, or playing in dirt or leaves.
• Sports: Know which sports your child can play safely and what special steps to take, if any. Your healthcare provider can help you find the right activities.
• Using antimicrobials: Understand when your child’s healthcare provider prescribes antimicrobials (like antibiotics) to prevent infections and when they are prescribed to treat an infection. It's important to take all antimicrobial medications as the healthcare provider prescribes.
• Vaccines: Make sure your child and everyone in your home gets the vaccines they need. Kids with some types of PI may not be able to get live vaccines, but most can get other types of vaccines. Always check with the healthcare provider managing your child’s PI, such as their clinical immunologist, before getting a vaccine.
• Food: Talk to a registered dietitian if you are worried about your child's growth or eating habits. Registered dietitians, in contrast to nutritionists, are trained and licensed professionals with expertise in nutrition.
• Dental care: Go to the dentist at least every six months to prevent tooth and gum infections, which can be serious for kids with PI [6]. Make sure your child brushes and flosses every day.

Kids with PI do best when they get real, easy-to-understand information about what's going on with their health. Knowing the facts makes them less scared and unsure, which helps them feel braver and safer. Let them ask questions and talk honestly about how PI affects their everyday lives. This helps build trust, helps them handle their feelings, and teaches them how to deal with problems. When kids trust their caregivers, they're also more likely to trust their healthcare providers. This makes going to appointments and getting treatments easier.

Before you go to an appointment or have a procedure, explain what's going to happen in a way that's easy for your child to understand and makes them feel safe. Answer these questions:

• Why do they need to go to this appointment or get this procedure or treatment?
• Who will be there?
• What supplies or equipment will they use?
• What will it feel like—like pushing, a little uncomfortable, or a little bit painful?

Getting ready like this helps your child worry less and feel like they have some control.

If your child will be in the hospital, you can ask to meet with a child life specialist. These are people at the hospital who are trained to help kids understand and deal with being in the hospital, having surgery, or getting treatments by playing, teaching, and giving them support [7].

When kids learn they have PI, they might feel confused, scared, upset, or sad. These feelings are normal. Let your child know that everyone feels this way sometimes, and it's okay to talk about it. Try to talk at the same time each day, like before bed or in the car. This helps kids feel safe and supported. Tell them their feelings are important and that you're always there to listen.

Ask questions that get them talking, not just "yes" or "no" questions. For example, instead of asking "Are you upset?," try asking "What's been worrying you lately?" or "How do you feel when you can't do your activities?." You can also ask about their behavior, like "I've noticed you've been getting upset more easily—what do you think is making that happen?." This helps kids connect their feelings to what's happening and helps you solve problems together.

You can also help your child show their feelings by playing, drawing, writing in a journal, or telling stories. Studies show that playing can help kids with chronic illnesses feel less anxious and become more resilient [8].

Kids with PI might feel like they can't control their lives, especially when they have to go to appointments, get treatments, or be careful about getting sick. Letting them make choices can help them feel more in control. Let them choose small things like what to wear, what to eat, or what game to play. When they're at a medical appointment, let them help make decisions if they can. Let them choose which arm to use for a blood test, which day is best for treatment, or how they want to sit during an infusion. These choices help them feel confident and trust you.

Supporting your child’s mental health is important for good PI care. Here are some everyday things caregivers can do to support their child’s mental health:

• Name and accept feelings: Talk about feelings and let your child know that it's normal to have them. Set aside short, regular times to check in with your child.
• Maintain routines: As much as possible, stick to regular routines like wake-up times, meals, school, and bedtimes. This helps create a sense of stability.
• Stay connected: Plan easy ways for siblings and caregivers to connect, like short walks or video calls.
• Use school resources: Let the school nurse or teacher know if your child needs extra help.
• Connect with others with PI: Tweens and teens who have PI may feel like people don't understand them and that they are all alone. Even though family and friends may try to understand what it's like to have a chronic illness, only people who have PI can truly understand. Help your child connect with others their age with PI online or through in-person events.

Young people with ongoing health needs are more likely to experience anxiety and depression compared to their peers [9]. Checking for these issues and getting help early can help kids deal with their condition, stay interested in school, and stick to their treatment plans. The American Academy of Pediatrics (AAP) suggests checking on kids' mental and social well-being as part of their regular healthcare [10].

Children with PI and their siblings may have reactions that are common in those with chronic health conditions, such as:

• Mood changes: Feeling worried, scared, sad, annoyed, guilty, or constantly uneasy.
• Behavior changes: Getting angry easily, not wanting to follow medical advice, feeling anxious when away from caregivers, or acting younger than their age.
• School challenges: Grades dropping, having trouble paying attention, or missing school.
• Social challenges: Feeling alone, feeling like they don't fit in, or losing interest in things they used to enjoy.
• Self-esteem concerns: Saying negative things about themselves or feeling bad about their bodies.
• Physical cues: Changes in appetite or sleep, stomachaches, headaches, feeling tired, or being overly active.

If your child expresses the following behaviors or feelings, they might have depression:

• Feeling sad for a long time.
• Changes in how they sleep or eat.
• Saying bad things about themselves.
• Not wanting to be with friends.
• Getting angry or upset easily.
• Feeling like things will never get better.
• Crying a lot.

If these signs last for more than two weeks, it's important to get help from a mental health professional. Don't wait until things get really bad. Ask your healthcare team for recommendations for a child psychologist or family therapist. Many children's hospitals also have child life and social work services.

There are many therapy options. You can explore therapy for the child alone; therapy for caregivers; therapy for couples or the whole family; and support for siblings. If your child has signs of traumatic stress (nightmares, avoiding things, being easily startled), look for therapists trained in post-traumatic stress disorder (PTSD) or medical trauma care [11].

Find the right help

Create a crisis plan with your child, which can include warning signs or behaviors to watch for, strategies for relief, trusted individuals to tap for support, and safe places to go to [12]. Save the 988 mental health crisis hotline number and website (https://988lifeline.org/) in your phone and share it with your child or trusted caregivers.

When a child with PI goes to daycare, preschool, or school, it's important to plan ahead to help them stay healthy, connected, and supported. Each stage of education, from early learning programs to high school, has different challenges. You need to find a good balance between preventing infections, learning, and being social. The “School Guide for Students with Primary Immunodeficiency” contains detailed information on particular concerns and the legal rights of students with PI.

To support your child at school, ask the school about creating one or more of the written plans listed below. These plans support students with specific health and educational needs so that they can participate as fully as their peers. A 504 plan or IEP can provide accommodations for mental health needs as well, if needed.

• Emergency Care Plan (ECP): Gives simple, detailed steps for handling urgent or emergency situations related to a student's health problem.
• Individualized Healthcare Plan (IHP): Used every day at school to manage a student's health. It gives information about medicines, symptoms, treatments, and how to communicate between caregivers, students, and school staff.
• Section 504 plan (504 plan): Provides accommodations and/or modifications, such as rest breaks or flexible deadlines, that help a student with a disability succeed in school.
• Individualized Education Program (IEP): Provides additional services and/or specialized instruction for a student with a disability who qualifies for special education under the Individuals with Disabilities Education Act (IDEA).

All kids benefit from trying new hobbies and using their skills. Help your child find things they love, like art, sports, music, dance, or science. Assist them in setting goals that are doable based on their skills, treatment plan, and energy. When kids focus on what they can do, it helps them bounce back from tough times, feel confident, and know who they are, beyond their health issues.

Being involved in activities outside of home, school, and medical visits is a key part of being a kid. Playing and spending time with friends can help kids handle the challenges of being sick and feel happier. If you can, plan medical appointments and treatments around important school events or other activities. This shows your child that their hobbies and friends are just as important as their healthcare.

Help kids understand the difference between being curious and bullying, and practice how to handle each situation. Teach children short responses that allow them to leave the situation, such as, "I'm going to sit with my friends now." Tell them to find a trusted adult who can help. You can find research-based advice for caregivers and schools, including how to record and report concerns, at StopBullying.gov [13].