Tuberous Sclerosis Clinic | What to Expect

All members of our multidisciplinary team are involved in each patient’s care, no matter who you see at your appointment. Because of this multidisciplinary approach, each appointment is tailored to the patient’s needs.  A patient may see a variety of specialists:

• Your primary contact person for information and appointments is the Tuberous Sclerosis Clinic coordinator.
• The pediatric neurologist manages neurological problems, such as seizures. Neurology nurses and neurology nurse practitioners may also work with you or your child to treat seizures or other nervous system disorders related to TS.
• The pediatric nephrologist treats conditions such as polycystic kidney disease and renal angiomyolipomas.
• The pediatric psychiatrist evaluates and treats behavioral and psychiatric issues in children with TS.
• Pediatric neurosurgeons treat tumors in the brain, or perform procedures to treat some types of seizures.
• The pulmonologist tests for, diagnoses and treats pulmonary issues related to TS.
• Geneticists and  genetic counselors provide genetic counseling to patients with TS and their families.
• The social worker can help your child or family manage the emotional and psychosocial challenges that come with a diagnosis of TS. He  or she may offer counseling or may refer your child or family members to additional support resources.
• The cardiologist evaluates and treats patients with cardiac arrhythmias, rhabdomyoma heart failure and other heart conditions that may occur in patients with TS.
• A research coordinator may work with you or your child in relation to research or clinical studies at Cincinnati Children’s.
• A pediatric ophthalmologist treats TS patients suffering from eye problems caused by the disease or by its treatment.
• TS can cause unique dental problems, so our team includes a pediatric dentist, who is familiar with treating these manifestations.

Care team members may order tests during a visit to the TS clinic. Some of the more common tests may include:

• EEG., a tracing of brain activity
• EKG, a tracing of heart activity
• Echocardiogram or renal ultrasound, a scan of the heart or kidneys using sound waves
• MRI, an imaging scan of the brain or other major organs
• Advanced neuroimaging
• Interventional radiology
• Embolization
• Chest CT (computed tomography) scan
• Pulmonary function tests (PFTs)
• Genetic testing
• Blood tests

If you or your child has had testing, it is important to send those results to us ahead of your appointment so that we may avoid duplication of tests.  Other testing may be recommended to help care team members better understand your specific needs. These tests may be scheduled for after a visit.

After the initial appointment, TS Clinic specialists will request follow-up visits to address specific medical issues, such as seizures and behavioral problems. Follow-up visits provide ongoing management of medical, neurological and psychological problems for children and adults.