What to Expect
The First Neurofibromatosis Clinic Visit
A child’s first appointment in our clinic begins before they arrive. Our team reviews the child’s medical records and one of our genetic counselors calls the family to discuss why the child was referred to us, what to expect at the appointment, and to review the child’s medical and family history.
Children are evaluated by both members of the Divisions of Genetics and Ophthalmology in the same clinic space. We pack a lot into the clinic visit, so families are told to plan for 2 ½ to 3 hours. Each clinic visit includes a complete eye exam and a thorough physical exam. We check bones and growth, skin, heart and lungs, and neurologic function. We also allow plenty of time to talk with the doctors and genetic counselor about the findings from the exams and possible next steps to be taken.
Annual Clinic Visits
If children are doing well, they are seen again in one year for another detailed body and eye exam to look for any complications of NF. However, if any concerns arise between annual visits, our team is always available to help the children and families in our care.