What to Expect at Your First Appointment at the 22Q-Velocardiofacial Syndrome Clinic

Wherever you may be on your child's journey with 22Q-Velocardiofacial Syndrome (22Q-VFS), our experienced and compassionate team is here to help. We routinely work with families at all stages of a 22Q-VFS diagnosis, including during pregnancy, after childbirth and into the baby and toddler stages.

Our team includes geneticists, speech-language pathologists, otolaryngologists, psychiatrists and many other providers with the expertise, insight and passion to help your child and family. We're here to answer your questions and help you prepare for your child's future (and success).

Just like you already realize, we understand that each child with 22Q-VFS has individual needs, goals – and deserves a treatment plan to reflect that. We'll work closely with you and all our team members to create a path forward that addresses their medical and emotional needs.

Think of the clinic as your “home base” for all things 22Q-VFS related. Here, we'll help manage and coordinate all aspects of your child"s condition and symptoms. That includes:

• Discussing your child's symptoms or challenges
• Ordering and reviewing lab work
• Prescribing and managing medication
• Referring your child to specialty providers (if needed)
• Supporting your family's needs

Learn what you can expect at your first appointment at the 22Q-VFS Clinic. We're excited to meet you and do whatever we can to support your child and family.

Making an Appointment at the 22Q-Velocardiofacial Syndrome Clinic

Your child's pediatrician or specialty provider can fax a genetics referral to our department. Please ask your child's doctor to include the following information:

• Cincinnati Children's Hospital Medical Center referral form
• Last clinical note
• Previous genetic testing (if applicable)
• Front and back of your child’s insurance card

Once we receive your child's referral, one of our schedulers will call you to set up the appointment. During this call, we may ask for additional information about your child's medical history. We may also reach out to your child's providers to learn more about their symptoms or current diagnosis. This allows us to schedule your child's appointment with the correct providers.

Families and providers can send medical records, including past genetic testing results, through MyChart or email. Our staff members will walk you through the process of requesting and sending this information.

On the Day of Your Visit to the 22Q-Velocardiofacial Syndrome Clinic

Before Your Appointment

We want to make your visit to the 22Q-VFS clinic as easy and stress-free as possible. Our clinic has engaging artwork (perfect for “Eye Spy”) and activities like coloring pages, crayons and puzzles to help pass the time.

There are no special preparations for your child's appointment. All you need to bring is insurance information and, of course, your child. For foster children or children in custody of the county, please bring documentation which shows your right to consent for the child.

Your child is encouraged to wear clothing that is comfortable. Socks and short sleeve shirts (or layers) make it a little easier to gather basic health information, such as weight and blood pressure.

Please plan to arrive about 15 minutes before your appointment. You will also need to plan for about 10 to 15 minutes to park and walk to our clinic. When you arrive, please check in at the clinic's registration desk.

For telehealth appointments, a medical assistant will call you 30 minutes before your child's appointment. This allows us to collect basic information about your child, including the goal for the appointment.

Please call us if you are running late.

At Your Appointment

The focus of your first visit to the 22Q-VFS Clinic is to build a relationship with our team. You'll meet with your child's geneticists, and possibly other specialty providers. This appointment takes approximately 45 minutes. (We'll work to schedule all other appointments on the same day as your visit to us.)

22Q-VFS can be a complex condition, which affects every child a little differently. During your visit, we'll have an in-depth review of your child's symptoms or complaints.

We discuss many different topics including:

• Current symptoms
• History of present illness
• Birth history
• Family history
• Past medical history
• Social determinants of health
• Growth and development

Your child's provider will also:

• Perform a physical exam (including brief developmental assessment)
• Review genetic testing
• Review other test results
• Screen for common 22Q-VFS complications

This in-depth exam and conversation allow our team to develop a plan of action that's tailored to your child. Your child's doctor may then:

• Order additional tests
• Refer your child to other specialists
• Prescribe medication
• Refer your child to occupational, speech or physical therapy

We'll also share research opportunities that your child may be eligible for. Participation is completely voluntary.

Follow-up visits are similar. We'll also discuss new test results, new symptoms and any other chances since your child's last appointment.

After Your Visit to the 22Q-Velocardiofacial Syndrome Clinic

You will receive an After Visit Summary before you leave, which includes important information about upcoming appointments or recommended tests. We may ask you to come back for a follow-up appointment, or have you return annually for genetic testing.

You are welcome to contact us at any time with questions or concerns. We believe that good communication, compassionate care and support whenever you need it is the foundation of not only delivering good outcomes but also building your (and your child's) confidence in their care.