Herscot Center for Tuberous Sclerosis
Tuberous Sclerosis Treatment Program
Virtual Visits: Care teams at the Herscot Center are available for video or phone visits – even for initial appointments. Call 617-726-0241 for more information.
Experts are hopeful that current clinical trials and genetics research will lead to treatments for the disorder itself, and one day even a cure for TSC.
– Parent of a patient at the Herscot Center
Dr. Thiele has been treating my son for about 20 years... She is so invested in her patients and we could not imagine choosing any other neurologist to care for my son. She is caring, brilliant, considerate, open to researching new treatments... We just love her!
Symptoms of TSC can vary widely from one individual to another. As a result, treatments must also vary and be specific to each individual's set of symptoms. People who are mildly affected by TSC can lead healthy, productive lives with little or no treatment, aside from periodic examinations. Those who are much more severely affected, suffering from epileptic seizures, debilitating cognitive or behavioral problems, or advanced kidney or lung dysfunction, may require much more extensive and intensive medical treatment.
The symptoms of TSC that are most often treated are the following:
- Behavioral Disorders
TSC specialists may control behavioral issues—such as attention deficit hyperactivity disorder (ADHD), anxiety, aggression, sleep disorders, and depression—in people with TSC using medications, supportive talk therapy, and cognitive behavioral therapy, traditionally used to treat these problems in the general population.
- Developmental or Learning Disorders
Parents, school staff, therapists, and others may help minimize the effects of learning problems by providing special programs and tutoring within a traditional school setting. These programs may be developed following neuropsychological testing and assessment by an educational psychologist or neuropsychologist and may follow a student's individualized educational plan (IEP). People whose cognitive abilities are more severely affected may require more intensive special education and/or occupational therapy programs.
- Kidney Problems
Physicians may use medications to treat high blood pressure often associated with kidney problems. They may also help people with TSC who have less-than-optimal kidney function by placing them on a diet low in protein and potassium. If necessary, physicians can limit the progression of kidney tumors and cysts by reducing the blood supply to these growths, a process called embolization, or by surgically removing them. In the event of severe kidney dysfunction, they may also perform dialysis treatments or perform a kidney transplant.
Neurologists and neurosurgeons may control seizures, including infantile spasms and other types of epilepsy, with antiepileptic medications, vagus nerve stimulation, or surgical removal of cortical tubers, thought to be the cause of seizures. Physicians and nutritionists may also prescribe a high-fat diet, called a ketogenic diet, to control seizures by altering the brain's metabolism.
- Skin Problems
Dermatologists may use laser surgery or other surgical techniques to remove skin lesions such as facial angiofibromas, periungual fibromas, and, in some cases, shagreen patches and forehead plaques.
- Subependymal Giant Cell Astrocytomas (SEGAs)
Neurosurgeons may surgically remove one of these brain lesions in the event that it threatens to block the flow of cerebrospinal fluid and cause a buildup of pressure inside the cranium. In some cases, SEGAs grow back and must be removed again.
Because TSC is a lifelong condition with a wide variety of symptoms, individuals should be monitored regularly by a physician with experience in treating people with the disorder. In addition, individuals with TSC and/or their families should carefully monitor symptoms at home, between examinations. By doing so they can recognize symptoms at their onset and seek the appropriate medical care when necessary. This careful monitoring can help minimize the impact these symptoms may have on an individual's health and quality of life.
The Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex at Massachusetts General Hospital delivers specialized care for individuals suffering from Tuberous Sclerosis Complex. Please support the Herscot Center with a donation today. Thank you!