What to Expect at Your First Appointment for Rubinstein-Taybi Syndrome

Because every child with Rubinstein-Taybi Syndrome (RTS) is unique, our approach to care is too. We are here to help you figure out what works best for your family so that you can create a healthy, happy, safe and productive life for your loved one.

RTS is a rare genetic condition that impacts health and development. Cincinnati Children’s has specialty physicians with experience caring for children with RTS. Specialty physicians within the divisions of Developmental and Behavioral Pediatrics and Human Genetics collaborate to provide clarity about the diagnosis of RTS and guide interventions and supports.

An initial visit typically includes an appointment with a geneticist and a genetic counselor, as well as an appointment with a developmental pediatrician who has expertise in RTS. We are fortunate to have a variety of pediatric specialists beyond genetics and developmental pediatrics who have seen a number of patients with RTS. Based on your initial visits, we may recommend other sub-specialists in your community or within Cincinnati Children’s. We also provide guidance for therapies and supports within your community. Your care team will create a plan with you based on shared priorities for your child.

We are fortunate to offer support for families of children, adolescents and adults with RTS. Feel free to contact us or visit our webpage on RTS support and resources.

Making an Appointment

To schedule a visit with Developmental and Behavioral Pediatrics and Epigenetic Syndromes Clinic in Genetics, we recommend you get a referral from your pediatrician or another care provider. You can schedule an appointment on your own or call us to learn more about our clinical visits.

Insurance coverage varies from case to case, and your insurance plan may require approval before your first visit. Contact our financial assistance team if your insurance plan doesn’t cover treatment.

Preparing for Your Visit

We respect your time and work to make appointments easy and efficient. You can help us get to know your family better by preparing for your child’s first visit.

Before your appointment, we will review available information about your child. Please send us a list of institutions or hospitals where your child has been treated so that we can request your child’s medical records.

Your physician will review this information in advance so they can focus on your child’s needs during their visit.

If you’re traveling to our center for treatment, our concierge services may be able to help you plan where to stay. We offer families several affordable options close by:

• Ronald McDonald House
• Bold and Brave apartments
• Airbnb house rentals
• Discounted-rate hotels

On the Day of Your Visit

During the first visit, we want to make sure we address your top priorities and answer all your questions. We will take a history that includes medical information as well as details about your child’s development and social-emotional well-being. We’ll review prior medical records and any test results. We will do a comprehensive physical exam.

We may recommend additional medical testing including blood work or other studies. Cincinnati Children’s has child life specialists in some locations to provide support during testing. We take a strengths-based and shared decision-making approach to build a medical, developmental and behavioral plan. By the end of the visit, we will discuss your priorities, our concerns and next steps for your child.

If you’re interested, we can share opportunities for participation in family support activities and research studies.

Before Your Appointment

Please arrive 15 minutes before your appointment.

For your appointment with the developmental pediatrician, the office is located on our Burnet Campus Medical Office Building at 3430 Burnet Ave. There is a parking garage conveniently connected to our building.

For your appointment with the geneticist and genetic counselor, the office is located on our Burnet Campus at 3333 Burnet Ave. 5th Floor Building C.

Please contact us if you are running late for your appointment.

At Your Appointment

During your appointment, you’ll meet with a physician who has experience caring for RTS. They will:

• Determine your top priorities and goals you have for your child
• Gather additional information about your child (health, development, well-being)
• Perform a physical examination
• Answer questions about your child’s diagnosis and treatment

• Build a shared treatment plan for your child and your family

• Give you information about support and resources in the community

After Your Visit

You will receive an “After Visit Summary” before you leave. This document includes important information about your next appointments and the next steps in your child’s care. Please reach out to your child’s care team with any questions or concerns you have between appointments. Families can sign up for MyChart, which allows ongoing communication with the providers and access to your child’s medical records with Cincinnati Children’s.