Gammaked Background

Children with Primary Immunodeficiency (PI)

The more you know about PI, the more you can help your child face the challenges of living with a chronic disease. Bringing family members, friends, and teachers into the loop will encourage the kind of understanding and special consideration you and your child need. Let them know that your child has a primary immunodeficiency and that the condition is inherited.1 It is not contagious, and has absolutely no connection with AIDS (acquired immunodeficiency syndrome). Your child is not a threat to other children. However, other children carry and pass around germs that can cause illness in a child with PI.


WORK WITH YOUR CHILD'S SCHOOL:

Discuss your child's condition with teachers and the school principal. Let them know that your child is susceptible to frequent infections and will possibly be absent more than other children. Discuss special requirements your child may have, such as taking medications during the day or needing to make frequent trips to the bathroom. Let teachers know that intravenous infusions must happen on a regular basis and that your child will be absent during these times. Give them the infusion schedule if possible.


KEEPING A JOURNAL FOR YOUR CHILD:

It's important for you to keep teachers, doctors and other healthcare professionals aware of what's going on with your child. A journal may make this easier. You can use a journal to record your child's medical history, complete with medicines, treatments, lab reports, a contact list of healthcare professionals, insurance information, infusion information and anything else you or your doctor thinks may be important regarding proper care for your son or daughter. Having a journal is often invaluable in an emergency situation, when less familiar healthcare providers may need information quickly.


TELLING YOUR CHILD ABOUT PI:

You must decide when and how to tell your child about chronic illness. Anxiety, confusion, and self-esteem issues are sure to come up and will need to be discussed openly. When you know what's troubling your child, you'll be better able to help overcome his or her concerns.