What to Expect During a Visit with the Genetics Team

Initial Visit

You will meet with the Genetics Nurse Practitioner (APN) and Genetic Counselor.

The Genetics APN will examine your child. The exam will include:

  • Measurement of your child’s arms, legs and other parts of the body
  • Watching how your child moves their joints and their range of motion
  • A general checkup, such as listening to your child’s heart and lungs

The Genetic Counselor may:

  • Collect a detailed family history from you. This will include asking you about health conditions that have affected the child’s biological (related by birth; sometimes called “blood relatives”) parents, siblings, aunt/uncles, grandparents, cousins, and other family members
  • Review your child’s medical and developmental history
    • Developmental history refers to the age of your child when they reached milestones such as learning to crawl, walk and starting to talk

The Genetics APN and Genetic Counselor will then review the findings and talk with you about possible next steps for your child (this may or may not include genetic testing).

If genetic testing is recommended, they will review the following with you:

  • The benefits and limitations of genetic testing
  • What genetic testing can and cannot tell us
  • How genetic testing could change your child’s care management and/or that of other family members
  • The insurance prior authorization process for genetic testing
    • Insurance prior authorization means that your insurance provider has to approve the testing before it is done. Approval usually means your insurance will cover some or all of the cost of the testing. However, this varies by insurance plan.

For patients who already have a confirmed diagnosis, the Genetics APN and Genetic Counselor will:

  • Review details of the condition, including family history and clinical features
  • Ensure that your child is being followed by all of the recommended healthcare providers/specialists and having all recommended screenings such as an eye exam
    • If needed, we will provide referrals for specialists
  • Help coordinate genetic management/testing for other family members
  • Work with the family to help explain the diagnosis to your child and involve your child in the conversation. This will help your child take ownership in their healthcare.
  • Connect your family with resources and support organizations for your child’s condition
  • Ensure that your child has the tools needed to succeed in daycare, school, work, etc.

What You Need to Know About Genetic Testing

  • Is always your choice
  • It is not part of the first visit with our clinic
  • It is only done if the APN and Genetic Counselor recommend testing and the family agrees to move forward with testing

To Prepare for Your First Visit

If possible, collect the following information about your child’s biological family members including:

  • Current ages of living biological family members
  • Causes of death for any biological family members who have died (and age at the time of death)
  • Any medical problems, especially those involving the heart, eyes, or skeletal system (bones)
  • Results of any genetic testing that has been done for your family
  • Obtain copies of any genetic testing results done for your child (outside of Lurie Children’s)
  • Your child’s glasses/contact lens prescription (if applicable)

Follow-up Visits

Follow-up visits with the Genetics team will consist of:

  • The Genetics APN will complete a physical exam
  • The Genetic Counselor will go over any test results with you

What About Billing & Insurance Coverage?

Genetics appointments will be billed as an appointment with the Genetics APN.

You can call 1.800.KIDS DOC (1.800.543.7362) to speak with Billing about the plans that Lurie Children’s accepts or call your insurance company for information about coverage for a Genetics clinic visit.

Other helpful contacts at Lurie Children’s: