What to Expect During Your First Tuberous Sclerosis Clinic Visit
The Tuberous Sclerosis Clinic at Cincinnati Children's cares for nearly 600 children and adults each year who come to us from across the nation and around the world. Although there is no cure for tuberous sclerosis complex (TSC), treatment allows many people with the condition to lead full, productive lives.
Our program draws on the expertise of pediatric and adult specialists from a variety of disciplines who work together to provide a holistic approach to caring for you or your child. And we make care more convenient – you can often see multiple specialists on the same day and location.
We also offer online second opinions for patients and families inside the United States who live beyond the Greater Cincinnati area (southwest Ohio, northern Kentucky and southeast Indiana). Established patients may also be able to be seen via telemedicine depending on the state you live in.
Learn more about what to expect during your visit to the Tuberous Sclerosis Clinic.
Making an Appointment
Our clinic coordinator acts as your primary contact person for information and appointments. For appointments, referrals and general information, contact us.
If you or your child are an international patient, please use this online form to request an appointment.
We accept physician referrals and self-referrals. Please contact your insurance provider to obtain authorization before self-referring.
Before Your Appointment
Confirm Your Insurance Coverage
We accept all forms of insurance and Medicaid. But unlike the process for a typical pediatric check-up, getting your insurance to cover specialty care requires a few additional steps. Please complete the following steps before your first visit to make sure care is covered:
- Call your health insurance provider and explain the purpose of the visit.
- Ask your insurance company if Cincinnati Children's Hospital Medical Center is a provider. (We may also be listed as Children's Hospital Medical Center of Cincinnati.)
- Confirm your coverage and whether you need a referral from your primary care physician.
- Ask if they require additional documentation from other local providers.
If you do not have insurance, or you are worried about being able to pay for care, we are here to help. Learn more about our financial assistance policy.
Provide Your Medical Records
Please ensure your primary care provider sends us your or your child's medical history before your first visit, including any testing you or your child has had. These results will help avoid duplicate testing. If you have test results or medical records not from Cincinnati Children's, you can mail or fax them us.
On the Day of Your Visit
Your first visit will be more involved than a typical visit to your primary care provider. Please let us know in advance if you or your child have special needs or concerns; we will do our best to accommodate them.
Arriving at Your Appointment
The Tuberous Sclerosis Clinic is located at Cincinnati Children's Burnet Campus. We recommend arriving at least 15 minutes before your scheduled appointment to allow for registration.
Please also allow about 15 to 20 minutes to park and walk to the clinic. If you are running more than 30 minutes late, please contact us.
During Your Appointment
Your first visit will include a complete evaluation of your or your child's condition.
A Team of Clinical Specialists
The visit will also include treatment planning with specialists from multiple departments, depending on your needs. For example, you or your child may see:
- A neurologist or neurology advance practice nurse
- A nephrologist
- A psychiatrist
- A psychologist or developmental specialist
- A pulmonologist
- A geneticist or genetics counselor
- A social worker
- A research coordinator
Additional specialists at Cincinnati Children's with expertise in TSC are also available and may be coordinated with your appointment based on you or your child's needs. These may include:
- A cardiologist
- An ophthalmologist
- An endocrinologist
- A dentist
- A plastic surgeon or dermatologist
- A neurosurgeon
- A gynecologist
Testing
These care team members may order tests during your first visit. Some of the more common tests 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 already, sending those results to the clinic before your first visit can help you avoid duplicate tests.
After Your Visit
After your initial appointment, the specialists on your care team may request follow-up visits to address specific medical issues, such as seizures and behavioral problems. These follow-up visits will help you or your child manage any medical, neurological and psychological issues experienced because of TSC.
