Tuberous Sclerosis Syndrome

What are the screening options for TSC?

Suggested screenings for people with TSC or at risk for TSC include:

Ultrasound of the kidneys every one to three years (or more frequently if necessary). An ultrasound uses sound waves to create a picture of the internal organs.

Magnetic resonance imaging (MRI) or computed tomography (CT or CAT)
scans of the kidneys, if necessary, to follow-up after the ultrasound evaluation. An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. A CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine.

MRI or CT scan of the head every one to three years, through the teenage years

Electroencephalogram (EEG), as needed, for seizure management. An EEG is a test in which electrodes are attached to the outside of a person's head to measure electrical activity of the brain.

Developmental and behavioral evaluations of children before they begin school
and repeated as necessary

Echocardiogram (heart evaluation) if symptoms suggest a need

Chest CT scan if symptoms suggest a need

Screening recommendations may change over time as new technologies are developed and more is learned about TSC. It is important to talk with your doctor about appropriate screening tests.