Caring for a Child:
Understanding Your Role

If you're caring for a child with primary immunodeficiency disease (PI, also known as PIDD), it's important to understand your role in his or her care. Below are helpful tips on coordinating your child's care, helping the family cope with hospitalizations, and communicating effectively.

Coordinating Your Child's Care

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

It is likely 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.

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 PI 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 & 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, even if it's only for a few minutes

Communicating Effectively

Children living with PI 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. For instance:

  • Eating or sleeping problems
  • Changes in school performance
  • New or increasing 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. Try:

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

For additional support, you may involve a guidance counselor or mental health provider.

Hear Carla Duff, ARNP Discuss Dialogue After Diagnosis:

“I want to make sure my patients are...well-educated about their disease, what it means, and what it means for the rest of their life.”

- Carla Duff, ARNP

Hear Prescribers Discuss Topics Surrounding SCIg Therapy

IDF eHealthRecord personal health record PDF

Electronic Personal Health Record:

The Immune Deficiency Foundation (IDF) eHealthRecord is a one-of-a-kind electronic personal health record developed for individuals and families living with primary immune deficiency diseases.

Important Safety Information
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Important Safety Information

WARNING: Thrombosis (blood clotting) can occur with immune globulin products, including Hizentra. Risk factors can include: advanced age, prolonged immobilization, a history of blood clotting or hyperviscosity (blood thickness), use of estrogens, installed vascular catheters, and cardiovascular risk factors.

If you are at high risk of thrombosis, your doctor will prescribe Hizentra at the minimum dose and infusion rate practicable and will monitor you for signs of thrombosis and hyperviscosity. Always drink sufficient fluids before administration.

Immune Globulin Subcutaneous (Human), Hizentra®, treats various forms of primary immunodeficiency (PI) in patients age 2 and over.

Tell your doctor if you have had a serious reaction to other immune globulin medicines or have been told you also have a deficiency of the immunoglobulin called IgA, as you might not be able to take Hizentra. You should not take Hizentra if you know you have hyperprolinemia (too much proline in your blood).

Infuse Hizentra under your skin only; do not inject into a blood vessel.

Allergic reactions can occur with Hizentra. If your doctor suspects you are having a bad allergic reaction or are going into shock, treatment will be discontinued. Immediately tell your doctor or go to the emergency room if you have signs of such a reaction, including hives, trouble breathing, wheezing, dizziness, or fainting.

Tell your doctor about any side effects that concern you. Immediately report symptoms that could indicate a blood clot, including pain and/or swelling of an arm or leg, with warmth over affected area; discoloration in arm or leg; unexplained shortness of breath; chest pain or discomfort that worsens with deep breathing; unexplained rapid pulse; and numbness or weakness on one side of the body. Your doctor will also monitor symptoms that could indicate hemolysis (destruction of red blood cells), and other potentially serious reactions that have been seen with Ig treatment, including aseptic meningitis syndrome (brain swelling); kidney problems; and transfusion-related acute lung injury.

The most common drug-related adverse reactions in the clinical trial for Hizentra were swelling, pain, redness, heat or itching at the site of injection; headache; back pain; diarrhea; tiredness; cough; rash; itching; nausea and vomiting.

Hizentra is made from components of human blood. The risk of transmission of infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, cannot be completely eliminated.

Before being treated with Hizentra, inform your doctor if you are pregnant, nursing or plan to become pregnant. Vaccines (such as measles, mumps and rubella) might not work well if you are using Hizentra. Before receiving any vaccine, tell the healthcare professional you are being treated with Hizentra.

Please see full prescribing information for Hizentra, including boxed warning and the patient product information.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

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Patient/Caregiver PI Learning Center Caring for a Child With PI
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Hizentra is manufactured by CSL Behring AG and distributed by CSL Behring LLC.
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© 2018 CSL Behring LLC. The product information presented on this site is intended for US residents only. HIZ/09-12-0016k(1) 9/2015