We recommend patients are seen in our clinic every 1-2 years during childhood. Around the time of puberty (~11-12 years of age), we recommend more frequent appointments. Return appointments may be short (~30 minutes) or long (1-2 hours) depending on the patient and their needs.
Patients returning to our clinic for follow up can expect to meet with the endocrinologist and genetic counselor to address their health and receive education. Additional specialists are determined based on patient age and needs. For example, our urologists are available to meet with adolescents interested in learning more about fertility preservation. Return appointments are also a good time for patients and families to ask questions and learn updates about advances in Klinefelter syndrome care and research.
We may recommend visiting the on-site lab after the appointment to check hormone levels.
We recommend all individuals with Klinefelter syndrome have neuropsychology testing around the time of school entry (1st or 2nd grade). Testing should be repeated at school transitions, such as before middle school, before high school, and before high school graduation. This type of testing identifies a child’s learning strengths as well as challenges, including attention, memory, language, visual reasoning, and thinking speed.
Common learning challenges for people with Klinefelter syndrome can include ADHD and reading/language based learning disabilities. The information from this testing helps children who need it receive support at school to promote academic excellence.
Neuropsychology testing can take 3-5 hours to complete, so it recommended to schedule an appointment on a separate day.