Tuberous Sclerosis Clinic

Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs including the brain, heart, eyes, kidney, lungs and skin. The incidence has been estimated to be 1 in 6,000 live births. Approximately 50,000 people in the United States, and more than one million worldwide, have TSC.

Mission

The mission of the tuberous sclerosis (TS) clinic at The Children’s Hospital is to provide comprehensive multidisciplinary health care of the highest quality to children with tuberous sclerosis complex, as well as further research of TSC.

The Children’s Hospital is located on a new major medical campus that provides comprehensive high quality care, education and research for both children and adults. This new location provides an opportunity to collaborate with adult neurologists and other health care professionals as we care for TS patients throughout the their life.

Multidisciplinary Clinic

Our collaborative multidisciplinary team provides medical, genetic, neuropsychological and social support for TSC patients and their families.

During the visit to the Multidisciplinary Clinic, your child will be evaluated by a pediatric neurologist, a neurology pediatric nurse practitioner, a genetics counselor and a neuropsychologist. Our social worker will also provide supportive counseling and assist with obtaining resources and support within the community.

The Multidisciplinary Clinic lasts approximately 3 hours.

Follow-Up Clinic

Our Follow-Up Clinic provides ongoing care of the child’s medical, psychological and social needs. During follow-up visits, your child will be evaluated by a neurologist and neurology pediatric nurse practitioner.

Since the clinic and its providers are located in one of the top five pediatric hospitals in the nation, each child has the opportunity to receive further evaluations by other medical specialists as needed. As part of regular follow-up care, we will arrange appointments with other medical specialties including ophthalmology, nephrology/urology, pulmonology, psychiatry, dermatology, cardiology and genetic counseling.

The Follow-Up Clinic lasts approximately one hour.

Diagnostic Testing

Diagnostic tests may be arranged before, during or after your visit. These tests include:

• Brain MRI and other advanced neuro-imaging
• EKG
• Echocardiogram
• Electroencephalogram (EEG)
• Chest Computerized Tomography (Chest CT )
• Renal Ultrasound

Research

The tuberous sclerosis clinic at The Children’s Hospital was selected to participate in the Tuberous Sclerosis Complex Natural History Database Project. This is a web-based database project that started in the fall of 2006 to collect and store medical information about individuals with TSC over their lifetimes. 

We are one of a network of participating TSC clinics nationwide. Participation is voluntary only after consent. If you are interested in participating in the project, please contact us for more information

Scheduling an Appointment

Appointments

If you or a family member is affected by tuberous sclerosis, please call our clinic at (720) 777-6895 to schedule an appointment. 

Referrals

Referrals to the TS Clinic can be made either by physician referral or family self referral. Please contact your insurance provider to obtain prior authorization as needed. 

Medical Records  

It is important that we review all medical records including any diagnostic tests prior to the visit. If you have records from outside The Children’s Hospital, please mail them to us prior to your child’s appointment. Please provide x-rays (MRI, etc) on disk or film and mail to:

The Children’s Hospital
Tuberous Sclerosis Clinic
13123 E. 16th Ave., Box B155
Aurora, CO 80045