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

Important Safety Information

WARNING: Thrombosis (blood clots) 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 blood clots, your doctor will prescribe Hizentra at the minimum dose and infusion rate practicable and will monitor for signs of clotting events and hyperviscosity. Always drink sufficient fluids before infusing Hizentra.

See your doctor for a full explanation, and the full prescribing information for complete boxed warning.

Hizentra®, Immune Globulin Subcutaneous (Human), 20% Liquid, is a prescription medicine used to treat:

  • Primary immune deficiency (PI) in patients 2 years and older
  • Chronic inflammatory demyelinating polyneuropathy (CIDP) in adults

Treatment with Hizentra might not be possible if your doctor determines you have hyperprolinemia (too much proline in the blood), or are IgA-deficient with antibodies to IgA and a history of hypersensitivity. Tell your doctor if you have previously had a severe allergic reaction (including anaphylaxis) to the administration of human immune globulin. Tell your doctor right away or go to the emergency room if you have hives, trouble breathing, wheezing, dizziness, or fainting. These could be signs of a bad allergic reaction.

Inform your doctor of any medications you are taking, as well as any medical conditions you may have had, especially if you have a history of diseases related to the heart or blood vessels, or have been immobile for some time. Inform your physician if you are pregnant or nursing, or plan to become pregnant.

Infuse Hizentra under your skin only; do not inject into a blood vessel. Self-administer Hizentra only after having been taught to do so by your doctor or other healthcare professional, and having received dosing instructions for treating your condition.

Immediately report to your physician any of the following symptoms, which could be signs of serious adverse reactions to Hizentra:

  • Reduced urination, sudden weight gain, or swelling in your legs (possible signs of a kidney problem).
  • Pain and/or swelling or discoloration of an arm or leg, unexplained shortness of breath, chest pain or discomfort that worsens on deep breathing, unexplained rapid pulse, or numbness/weakness on one side of the body (possible signs of a blood clot).
  • Bad headache with nausea; vomiting; stiff neck; fever; and sensitivity to light (possible signs of meningitis).
  • Brown or red urine; rapid heart rate; yellowing of the skin or eyes; chest pains or breathing trouble; fever over 100°F (possible symptoms of other conditions that require prompt treatment).

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

The most common side effects in the clinical trials for Hizentra include redness, swelling, itching, and/or bruising at the infusion site; headache; chest, joint or back pain; diarrhea; tiredness; cough; rash; itching; fever, nausea, and vomiting. These are not the only side effects possible. Tell your doctor about any side effect that bothers you or does not go away.

Before receiving any vaccine, tell immunizing physician if you have had recent therapy with Hizentra, as effectiveness of the vaccine could be compromised.

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, or call 1-800-FDA-1088.

Patient/Caregiver PI Learning Center Caring for a Child With PI
CSL Behring
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