What happens at a clinic visit?
During your first visit to the Neurofibromatosis and RASopathy Center, a genetic counselor and doctor or nurse practitioner will see your child. A detailed medical and family history will be recorded. A physical exam will be done. The results will be discussed with you and we'll talk with you about any questions. The first clinic visit generally takes about two hours.
A genetic counselor and doctor or nurse practitioner will continue to see your child during follow-up visits. Medical and family history information will be updated and additional physical exams may be done. Other specialists also may examine the child to look for potential problems or additional needs related to his or her medical condition. A follow-up visit generally takes one to three hours, depending on the number of health care providers scheduled to see your child.
After the clinic visit, your primary care doctor also will receive a copy of the clinic notes with our results and recommendations.
Preparing for a clinic visit
Bring the following to clinic appointments:
- A list of the medications your child takes or the medication containers.
- His or her current Individualized Education Plan, if applicable.
- Your health insurance card.
Check to make sure we have any necessary medical records, including X-rays, from other health care providers. We'll also ask you to fill out several forms in advance and bring them along to your clinic appointment.
Who will my child see?
A genetic counselor and a physician or nurse practitioner will see your child.
Children's Hospital is a teaching hospital and many of our specialists train other doctors to care for kids. In addition to your child's main health care providers, you may see the following:
- Medical students who are training to be doctors.
- Graduate students who are training to be genetic counselors.
- Residents who are doctors in specialty training.
- Fellows who have completed a residency and are training in another specialty.
Your child's main health care providers will supervise the care they provide for your child.
To understand certain genetic disorders, your child may need tests, including:
- Genetic testing.
- Eye examination.
- Tissue sample of the tumor or skin lesion.
Medical treatment information
Understanding your child's genetic problems may take some time. This is our commitment to your family:
- Education. Our team will review the symptoms of your child's condition with you. We will provide written information about the condition, if possible.
- Support. We will assist you in coping with your child's condition. We will be available for questions and support.
- Medical management. We will discuss our medical management recommendations with you. Together, we'll address any questions or concerns you may have to help ensure good quality of life for your child and family. We will work with you and your child on a regular basis.
- Coordinated care. Our team will partner with your child's primary care doctor or other specialists to coordinate care and manage health problems.
Questions? We can help.
A genetic counselor will be assigned to your family. He or she will be your main point of contact in the clinic.
Contact your genetic counselor or doctor with any questions: (414) 266-3347.