Rett Syndrome
What to Expect

What to Expect at Your First Appointment at the Rett Syndrome Clinic

Experts at the Vinaya Rett Syndrome and Related Spectrum Disorders Clinic offer compassionate care for your family. Our team of specialists work together to diagnose your child’s condition and provide you with the support you need to manage your child’s complex medical needs.

We strive to improve the lives of families affected by Rett syndrome with comprehensive care. We truly care for the whole family, providing highly specialized physical and occupational therapy as well as support from social workers and psychologists. Your child’s treatment plan is unique to them and designed to help them maintain their abilities as much as possible.

Through our program, you also have access to specialists throughout Cincinnati Children’s. These experts can help you with special medical needs that can affect children with Rett syndrome, such as scoliosis or irregular heartbeats. With all your child’s care in one place, you’ll spend less time doing paperwork and more time with your child’s providers.

Learn more about what to expect at your child’s appointment with our Rett syndrome team.

Making an Appointment

Please contact us to speak with a specialist or make an appointment. We are privileged to care for children from across the globe and accept international patients to our clinic.

We also offer online second opinions to make it easier for you to receive expert advice on your child’s care. These appointments are available to families who live outside the Greater Cincinnati area. One of our specialists will review your child’s case and answer all of your questions about Rett syndrome and treatment options. These appointments are easy and secure. We will guide you through the entire process.

Preparing for Your Visit

Because Rett syndrome is a complex condition, we’ll need any medical information about your child that you have. We will work with you to get medical records, test results and other health information from your child’s current physicians before your appointment.

A nurse from the Rett syndrome team will contact you to review health information in preparation for the visit.

What to Bring

If your child has a communication device or system (picture symbols, communication board, etc.) or uses equipment to assist with mobility, please bring it with you so we can asses their current status and determine additional needs.

On the Day of Your Visit

Before Your Appointment

We ask that you arrive in our office 15 minutes before your appointment. Our office is located at Cincinnati Children’s Burnet Campus, which is a large hospital. Please be sure to leave plenty of time for parking and walking to our office.

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

At Your Appointment

During the first visit, you will meet with the entire care team including a neurologist, developmental and behavioral pediatrician, registered dietician, occupational therapist, speech therapist and social worker.

The visit may take a few hours and can involve extensive testing to confirm or refine a diagnosis of Rett syndrome or detect MECP2 mutations. This may include:

  • Genetic testing
  • Blood work
  • EKG
  • X-rays of the spine and pelvis
  • Hearing tests
  • Vision exams
  • MRI or CT

Based on the results of such testing and the initial evaluation, our team develops an individualized care plan, modifying it as the patient’s needs change over time.

To make care convenient for you, we strive to complete all testing in the first appointment. However, you may need to schedule additional tests at a later date.

After Your Visit

Rett syndrome requires complex, ongoing medical care. Your child will likely have many appointments; we will work with you to help coordinate these appointments.

You will receive a document called an “After Visit Summary” before you leave. It includes important information about the next steps in your child’s care, including any upcoming appointments or tests they have.

Frequently Asked Questions

There are multiple financial assistance programs available including our Family Financial Advocates. There are also waiver programs offered by every state. (Note: Waiver programs can have lengthy waiting lists.)

There are multiple resources available for you and your child that vary state to state and county to county. It is often helpful to contact your county developmental disabilities office. Our social worker is also available to discuss these resources. Please email for more information.

Schools have Individualized Education Plans (IEP) to help meet the needs of your child. There are educational advocates available throughout each state to assist in making sure your child’s educational needs are met. Please email for more information.