Caring for a Child with PIDD

If you're caring for a child with primary immunodeficiency disease (PIDD), it's important to understand your role in the child’s therapy. Learn how to coordinate your child's care, help the family cope with hospitalizations, and communicate effectively.

Coordinating your child's care
Coping with hospitalizations
Communicating effectively

Coordinating your child's care

As the parent or caregiver of a child living with PIDD, you are an important member of his or her healthcare team. You have to be aware of the child's symptoms and responses to treatment in order to effectively communicate with the physician.

It may be that more than one healthcare professional is caring for your child, in which case documentation is important. Many parents find it helpful to keep a diary to record important information. Items to be kept in a diary can include anything from lab results to current insurance information. A thorough diary can be especially useful when you have to leave your child in the care of others.

In addition to keeping and sharing a diary, a parent or caregiver plays an important role during office visits. It's up to you to ask questions on your child's behalf. Many people find it helpful to have a list of questions ready because of the limited time they spend with the doctor. It's also useful to take notes to help you remember everything the doctor says. And don't be afraid to ask for written instructions regarding medicines and treatments.

Coping with hospitalizations

Children with PIDD may end up in the hospital every once in a while. If this happens, there are simple things you can do to help minimize stress for the whole family.

For your child:

• Bring your child's favorite items from home, such as books and games, to help make the hospital environment more comfortable
• Talk to your child about certain procedures or events to help him or her know what to expect
• Stick to regular routines as much as possible

For siblings:

• Maintain a regular schedule as much as possible
• Communicate openly about the situation and provide updates as needed
• Encourage them to communicate regularly with their sibling, through phone calls, cards, and hospital visits

For parents and caregivers:

• Use support and resources available from friends, family, and the hospital itself
• Take care of yourself, ensuring you eat regularly and get enough sleep
• Take short breaks to get outside or simply away from the hospital room for a few minutes

Communicating effectively

Children living with PIDD may not always be aware of their specific needs, or may not know how to communicate them. If you think your child is having trouble coping, it's important to look for patterns that may indicate an issue. Some patterns to look for include:

• Eating or sleeping problems
• Changes in school performance
• An increase or emergence of fears
• Changes in behavior around others
• Withdrawing from others
• Setbacks in developmental milestones

If your child displays these changes in behavior, he or she may need extra support. These techniques may help:

• Talk to your child about his or her concerns
• Use toys to help a young child play out his or her experience. Adults can learn a lot by watching and participating with their children
• Encourage your child to draw or use other art forms to communicate. This can be a good way of learning what is on a child's mind

If your child doesn't respond to these techniques, additional support may be required from others, such as a guidance counselor or mental health provider.