Tuberous Sclerosis Complex

Tuberous Sclerosis Complex

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Tuberous sclerosis is a rare genetic disorder characterized by tumors that grow in different organs, including vital organs such as the brain, heart, eyes, and kidneys. The majority of these tumors are benign, but they can significantly impact your child’s health and development. Our team of specialists diagnoses tuberous sclerosis and related health concerns at the earliest possible stage. While there is no cure, a comprehensive treatment plan can help improve symptoms, control seizures, and lessen developmental issues.

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A Team of Specialists

Tuberous sclerosis requires a team of specialists to treat the variety of issues it causes, including seizures, developmental delay, and autism. For this reason, our tuberous sclerosis team includes neurologists, oncologists, cardiologists, pulmonologists, nephrologists, neurosurgeons, psychiatrists, dermatologists, and others skilled in the condition and related concerns.

Coordinated Care for Your Child
A pediatric specialist in tuberous sclerosis is your child’s primary point of care and coordinates your child’s treatment with other pediatric specialists throughout Duke. This ensures your child receives the care he or she needs in the fewest possible visits.

Support for Your Whole Family
You and your child may also benefit from the services provided by our experts in pain management, nutrition, social work, and child life.

Our Locations

Duke Health offers locations throughout the Triangle. Find one near you.

Diagnosis

Obtaining an accurate diagnosis at the earliest possible stage is the first step to ensuring your child’s complex disease is treated effectively. We will engage additional specialists depending on your child’s symptoms and needs. We follow standards of care developed by the Tuberous Sclerosis Alliance.

Comprehensive Exam

A comprehensive exam and a range of tests will be used to evaluate your child, and further tests may be recommended routinely throughout your child’s care. These may include MRI to examine the brain and kidneys, ultrasound to evaluate for heart and kidney tumors, and eye and skin exams. 

Electroencephalogram (EEG)

If your child experiences seizures, video EEG may be performed. It monitors brain activity and attempts to classify the type and locate the origin of the seizure.

Genetic Counseling and Testing

May be recommended to confirm the diagnosis and explain how the test results may relate to or affect other members of your family.

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Treatment and Monitoring

The appropriate treatment for tuberous sclerosis is determined by your child’s needs, including where tumors grow in the body, how big they are, and the impact they have on function, growth, and development. In general, the following treatments may be part of your child’s care.

Medications

Anti-epileptic medications may be prescribed to control seizures. Other medications may be prescribed to slow tumor growth or to treat conditions that arise as a result of the tumors.

Laser Surgery and Topical Creams

May be recommended to manage skin tumors.

Surgery

Surgical procedures may be necessary to alleviate symptoms in your child. When appropriate, we use the latest techniques -- such as ablation surgery to treat epileptic seizures.

Behavioral Therapies

A developmental specialist will help you manage developmental disorders your child may have, such as autism, depression, anxiety, and ADHD. 

Long-Term Monitoring

Long-term monitoring and screening identifies new tumors at the earliest stages, before problems develop. This is especially critical to reduce the risk of neurological complications that may result when tumors develop within the brain. 

Why Choose Duke

Tuberous Sclerosis Alliance Membership
The Duke Tuberous Sclerosis Clinic is one of three North Carolina centers recognized by the Tuberous Sclerosis Alliance, a nonprofit professional and community-based association dedicated to tuberous sclerosis research and advocacy. This designation means our clinic has met clinical practice standards for the highest quality care of children and adults with tuberous sclerosis.

Newest Therapies for Treating Complications
Our specialists stay current with ongoing research and the newest therapies for treating complications associated with tuberous sclerosis. This includes basic science research and new therapies for managing and preventing epileptic seizures in children.

Pediatric Epilepsy Specialists for Seizure Management
If your child has seizures -- as more than 80 percent of patients with tuberous sclerosis do -- pediatric epilepsy specialists will be involved in his or her care. Duke has received the highest rating of Level 4 epilepsy center by the National Association of Epilepsy Centers, based on our expertise and use of high-tech imaging and surgical techniques.

Transition to Adult Care
Our experts help your child transition to adult care when he or she turns 18. This continuity of care ensures he or she continues to receive ongoing monitoring and treatment for this lifelong disease.

Surgical Excellence
Duke Children’s is designated a Level 1 children's surgery center by the American College of Surgeons. This designation recognizes Duke’s commitment to providing the safest and highest-quality surgical care for our young patients. It also recognizes our resources and specialists that are not readily available at many other hospitals.

Best Children's Hospital in NC

In addition to being among the best in the country, Duke Children's Hospital & Health Center is proud to be nationally ranked in nine pediatric specialties.
Reviewed: 06/01/2018