Navigating Diagnosis with Your Child’s Healthcare Team

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What is a diagnosis?

Making a diagnosis — finding an explanation for your child’s heath problem — is a process, and people on your child’s healthcare team are your partners in the diagnostic process. The healthcare team may not be certain about your child’s diagnosis right away, and they may be considering multiple options.

There may be stages we go through as we work to determine the diagnosis. Words we may use:

  • Diagnosis: the underlying cause of your child’s symptoms
  • Differential diagnoses: a list of possible diagnoses being considered
  • Working diagnosis: the most likely diagnosis

How can I learn more about my child’s diagnosis?

The best way to learn about your child’s diagnosis is to ask questions. Ask:

About the diagnosis:

  • What is the diagnosis?
  • What else could be going on?
  • How did you arrive at this diagnosis?

About next steps:

  • What is the current treatment plan?
  • Are there other options?
  • What happens if we “wait and see?”
  • What are the risks?

How can I be an active member of the diagnostic team?

You are the expert on your child. Let us know if something is off or different in your child’s symptoms or behavior.

Every detail is important. You can keep track of your child’s symptoms:

  • On paper (a notes page and symptom tracker are included in the Welcome Packet and in this printer friendly version)
  • Use the notes app on your phone
  • With pictures and videos that you show to your care team

Daily rounds

If your child is admitted to the hospital, you’ll have the opportunity to participate in daily rounds. Each day, the medical team will meet as a group to check in with you and discuss your child’s care plan. If large groups can be overwhelming, let us know.

Visit this page for more tips on getting the most out of daily rounds.

What if I have a concern or need more support?

It is natural to feel overwhelmed when your child is in the hospital or going through a new medical diagnosis. It can be a lot to process and understand. It’s OK not to feel OK about a diagnosis.

You can always contact your care team and ask a member to:

  • Repeat information with less medical language
  • Connect you with a social worker for help with coping, advocacy or other resources
  • Call interpreters (1-877-463-7907) to translate into your preferred language or ASL
  • Consult with a child life specialist to help explain the diagnosis to your child and siblings
  • Request a MyCHOP code to gain access your child’s electronic medical record
  • Let us know if you’re worried that you child’s condition has changed

What about school and work?

  • You can ask for an excuse note from your bedside nurse.
  • A social worker can work with your child’s school to support their changing needs.
  • If you need to take a longer time off of work, your medical team can help with paperwork.

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Download a printer friendly version of this diagnosis guide complete with space for notes and a symptom tracker.