What to Expect at Your First Appointment with the Phelan-McDermid Syndrome Clinic
At Cincinnati Children’s, we provide comprehensive, coordinated care for children and families affected by Phelan-McDermid syndrome. Our multidisciplinary approach brings care together in one place, helping reduce stress for families and ensuring that medical, developmental, and support services are well coordinated. Your first visit is designed to help our team understand your child’s needs and to support your family from the very beginning.
Making an Appointment at the Phelan-McDermid Syndrome Clinic
Appointments require a referral from a healthcare provider. Once the referral is received, families can reach out to the clinic or may be contacted by our team to help with scheduling.
Before Your Appointment
To prepare for your first visit, please bring:
- past medical records
- any genetic test results
- any developmental evaluations
- a list of current medications and therapies
Writing down questions or concerns ahead of time can also be helpful. Together, our team will work with you to create a personalized care plan that supports your child’s health, development, and quality of life.
On the Day of Your Visit
Please let us know in advance if you or your child have special needs or concerns; we will do our best to accommodate them.
Arriving at Your Appointment
Our clinic is located on Cincinnati Children's College Hill Campus. We recommend arriving at least 30 minutes to find parking, walk to the center, and to register. Please contact us if you will be more than 30 minutes late.
At Your Appointment
During the initial appointment, your child may be seen by several specialists. These visits help us look at the full picture of your child’s health and development. Evaluations often include developmental and neurological assessments, feeding and nutrition reviews to check swallowing and growth, and screening for common medical concerns. These may include digestive issues, kidney and thyroid function, heart health, and vision or hearing needs.
Families will also meet with specialists who focus on learning, behavior, and development. This may include screening for autism spectrum disorder, attention or behavioral concerns, and recommendations for therapies such as speech, occupational, or physical therapy.
After Your Visit
After your visit, we’ll provide a summary that reviews your child’s care plan and helps guide next steps.
