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Advocating for your child

With everything from school to healthcare, your child with primary immunodeficiency (PI) relies on you for support. Learn how you can best advocate for them.

Know the essentials of your child’s condition

When your child is diagnosed with primary immunodeficiency, you become a vital part of their healthcare team and their main advocate. More than one provider will likely be involved in caring for your child, so keeping comprehensive and accurate records of their medical course is essential. Here are some recommended pieces of information to record:

  • A brief history leading to the diagnosis.
  • Copies of laboratory evaluations confirming the diagnosis.
  • A current list of providers caring for your child with accurate addresses and phone numbers.
  • A chronology of important events, specifically noting types of treatment and therapy, changes in therapy and subsequent responses to that therapy, surgeries, and hospitalizations.
  • A list of your child's current medications.
  • Allergies to medications.
  • Immunization record.
  • Current insurance information.
  • Explanation of benefits records.

Be prepared for medical visits

It is also recommended to bring a journal to each medical visit and to take notes, prepare a list of questions, and ask for written instructions concerning medicines and treatments. You should also prepare a tote bag with toys, age-appropriate activities, favorite books, a game device, a notebook, a contact list, and snacks to keep your child engaged during the visit.

As a caregiver, you are your child's best advocate, and it is important to communicate with their healthcare providers about any concerns or questions. Here are some tips on how to advocate for your child:

  • Ask questions about their diagnosis, treatment, and plan.
  • Inquire about what can be done to improve their health, such as diet, physical activity, sleep, and social activities.
  • Maintain consistent communication with the school if your child misses days.
  • Know your insurance policy and communicate any changes to your provider.
  • Build positive relationships with your child's providers, teachers, and therapists.
  • Ask about resources for further information at the local, state, and national levels.
  • Connect with IDF for additional resources: 410-321-6647.

Empower your child

As children develop, they begin to form their own thoughts and opinions of their care, and it is important to offer them choices when appropriate. This helps build confidence and prepares them to participate and eventually take care of themselves in adolescence and adulthood.

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Learn how to advocate in the following situations.

When caring for a child with PI in the hospital, parents, and caregivers must be vigilant about ensuring that their child receives proper care.

  • Ask questions and take notes during appointments.
  • Request a single room with the best isolation for the child.
  • Ensure healthcare professionals follow the doctor's directions.
  • Be assertive and speak up for the child's well-being.
  • Trust instincts and question procedures that seem illogical.

After a child is discharged from the hospital, families may have a home healthcare nurse visit to follow up.

  • Nurse should not visit if they are sick.
  • Nurse should wear disposable medical clothing.
  • Ask if a student nurse will accompany the licensed nurse and let them know if you prefer to limit visits to just one nurse.
  • Call the agency if you are not satisfied with the nurse.

Parents and caregivers of a child with PI will be the child's voice for years to come, so it's important to keep thorough medical records. 

  • Keep a copy of all medical records and test results in a binder.
  • Suggested sections for the binder include lab work, hospitalizations, specialists, pathology reports, x-rays, immunoglobulin orders, and emergency room visits.

Even after treatment, a child with PI may need accommodations at school due to their health condition.

  • Inform school staff about the child's health condition and obtain a 504 Plan.
  • The 504 Plan requires school staff to make accommodations for a child with a disability.
  • Develop a 504 Plan as a safety net for excessive absences or disease outbreaks.
  • The plan may include missed school work, test make-ups, extended time for homework, clean school supplies, access to a clean bathroom, and alerts for contagious diseases.
  • Meet with school administrators and teachers yearly at the beginning of school.


Learn more about communicating with schools