Tuberous Sclerosis Complex

Le Bonheur’s Tuberous Sclerosis Complex (TSC) Center of Excellence is a leader in the clinical care and research of TSC, a genetic disorder that causes tumor growth in organs throughout the body. Le Bonheur’s TSC program is designated by the Tuberous Sclerosis Alliance as a Tuberous Sclerosis Center of Excellence. To achieve this designation, the TSC clinic must have a high level of commitment to TSC care, subspecialties available relevant to TSC, education resources and participation in clinical trials.

Why Le Bonheur’s Tuberous Sclerosis Complex Clinic?

• Our TSC clinic is one of only a few pediatric centers in the world designated by the TSC Alliance as a Tuberous Sclerosis Center of Excellence.
• Our physicians have decades of experience in specialized care for TSC patients and have been closely involved in developing new treatments.
• Our Neuroscience Institute has the most advanced diagnostic tools available to help families and the medical team make the best decisions for each patient.
• We are actively involved in clinical trials for TSC and use the latest treatments available to care for TSC patients.
• We offer education and an online support group to families with children who have TSC.
• Our TSC clinic provides telehealth options in many states across the country and is regularly expanding access.

Comprehensive TSC Clinic

Our multidisciplinary clinic gives patients access to pediatric experts in cardiology, dermatology, genetics, nephrology, neurology, neuro-ophthalmology, neuropsychology, neuroradiology, neurosurgery, neurogenetics and neurodevelopment (TAND Clinic)  in one setting -- from childhood into adulthood. The clinic is led by physicians with decades of experience treating TSC and working on the cutting edge of new treatments and therapies. Our team works collaboratively and can work with your local care team to provide the best possible care and outcomes.

Pediatric Nephrologist John Bissler, MD, is director of the TSC Center of Excellence. Neurologists James Wheless, MD, and Sarah Weatherspoon, MD, serve as the co-directors, and Thomas Yohannan, MD, serves as the clinic's pediatric cardiologist. Both Dr. Bissler and Dr. Wheless serve as members of the Tuberous Sclerosis Alliance’s Professional Advisory Board. Pediatric Neurologist and Neurodevelopmental Specialist Tanjala Gipson, MD, leads Le Bonheur's TSC-Associated Neuropsychiatric Disorders (TANDs) Clinic.

The clinic also hosts educational programs for families and helps ensure all receive the best care possible. Through the Tuberous Sclerosis Alliance, we are able to provide families with information to understand TSC and better communicate with their child’s school and teachers.

Treatment Options

Le Bonheur’s TSC Center of Excellence provides the most up-to-date treatments based on your child’s needs. Our researchers are constantly searching for new methods to help children with TSC.

• Medications – a wide variety of medications are available to manage the symptoms associated with TSC
• Epilepsy Monitoring Unit (EMU) evaluation – some children may benefit from a stay in our EMU to record and diagnose seizures to assist in forming a treatment plan
• Kidney cyst decortication – a minimally-invasive procedure, surgeons are able to reduce the number of cysts on a child’s kidneys and prevent cysts from returning
• Epilepsy surgery – when medications aren’t effective, various surgery options are available for our patients

Advanced Technology

Our program features the latest technology for diagnosing and treating TSC. We are one of only a few children’s hospitals to provide such comprehensive technology, including:

• Transcranial Magnetic Stimulation (TMS) – a non-invasive method for detailed mapping of the motor and speech areas when planning a brain surgery
• Magnetoencephalography (MEG) – a tool that maps the brain’s electrical activity (processes that happen when the body is at rest) and brain activation related to sensation and language (processes that happen as a result of stimulation or task performance)
• Stereoelectroencephalography (SEEG) – a minimally invasive procedure to find where seizures are coming from in the brain using the ROSA One Brain technology
• Laser Interstitial Thermal Therapy (LiTT) – a minimally invasive procedure that uses heat from a laser to treat brain tumors, epilepsy and other conditions
• Single Photon Emission Computerized Tomography (SPECT) – a nuclear imaging test that can help diagnose and treat seizure disorders by showing which areas of the brain are most active during a seizure
• Responsive Neurostimulation (RNS) – a device used to treat seizures that is placed in the patient’s skull, connected with electrodes to the part of the brain responsible for seizure activity
• Vagus Nerve Stimulation (VNS) – a small device used to treat seizures that is implanted beneath the skin of the chest and has a wire that attaches to the vagus nerve in the neck, via this electrode
• Functional Magnetic Resonance Imaging (fMRI) – used to look at the functions of the brain in relation to the structure and pinpoint the area of the brain for surgery

What is a typical first appointment like?

Patients and families who come to the TSC Center of Excellence at Le Bonheur will work with a nurse coordinator to schedule their visit. Le Bonheur’s TSC Clinic provides all appointments with multiple specialties into one day so that your child can have a complete diagnosis and treatment plan. Some of the specialties your child may see include:

• Neurology
• Nephrology
• Cardiology
• Genetics
• Ophthalmology
• Developmental Pediatrics
• Dermatology
• Pulmonology
• Urology

In order to get an accurate picture of your child’s condition, they may need to have imaging procedures completed prior to the appointment or at the appointment. Our nurse coordinator will help to ensure all the proper imaging is scheduled. These diagnostic tests may include:

• MRI of the brain and kidneys
• CT of the chest
• Ultrasound and EKG of the heart

If your child has already been evaluated by other doctors, we try to get that information prior to your appointment with us. Please bring all medical records, medications and dosages to your appointment. For more information about our TSC clinic, call 901-287-7492.

Traveling to Memphis

• Out of town families may be able to stay at FedExFamilyHouse, a 75-room and suite facility for out-of-town families with children receiving treatment at Le Bonheur.
• Places to stay
• Family-friendly activities in Memphis

Expanding research

The physician researchers who care for TSC patients are also involved in studies to better understand the disease and develop innovative treatment options. View the latest research from our neurologists and nephrologists.

Our physicians are leaders in the treatment and research of TSC. They have shared their knowledge at the International Research Conference on TSC and Related Disorders hosted by The Rothberg Institute for Childhood Diseases and the Tuberous Sclerosis Alliance.

Le Bonheur’s TSC Center is part of the TSC Alliance’s Biosample Repository and Natural History Database. This biorepository stores samples of blood, DNA and tissue from TSC patients for researchers to use to advance treatment, test potential drugs and discover biomarkers of TSC. Samples are collected on a volunteer basis. If you are interested in participating contact us at 901-287-7492.

Video Resources

Tuberous Sclerosis and the COVID-19 Vaccine