What to Expect
A typical visit may include one-on-one consultations with the following specialists:
- Pediatric Endocrinologist/Geneticist for evaluation and/or diagnosis of disorder; monitoring of disease control; growth, pubertal development and other medical concerns; medical information about the disorder; and discussion of all treatment options.
- Genetic Counselor for family pedigree information; genetic counseling; DNA testing; make plans to review and discuss the results at the next visit.
- Psychologist (who specializes in DSD) to assess the patient's and family's ability to cope with issues associated with CAH and DHD, including delayed or advanced puberty; gender issues; medical and surgical treatment options.
- Public Health Nurse/Follow-up Care Specialist for information on local resources and help obtaining school-and health-related special services.
- Nurse Coordinator for explanation and initiation of the Emergency Medical Plan and obtaining patient and parent materials and information about the disorder.
- Pediatric Urology Surgeon (if surgery is a consideration) for information on the surgical procedures and outcome expectations.
- Obstetrician or Gynecologist for adolescent and adults including but not limited to menstrual issues, menarche, fertility, pregnancy, and sexuality.
During return and follow-up visits, patients and families meet only with the members of the team that address ongoing medical concerns. Due to the multifactorial nature of CAH and DSD, varying health issues might arise at different stages of a patient's life, requiring the expertise of one of our specialists. The team structure of our Center ensures that the specialist will already be familiar with the patient's ongoing care.