Treatment

Although there is no cure for tuberous sclerosis, treatment can help manage specific symptoms. For example:

• Medication. Anti-seizure medications may be prescribed to control seizures. Other medications may help manage heart arrhythmias, behavior problems or other signs and symptoms. A drug called everolimus (Afinitor, Zortress) may be used to treat certain types of brain and kidney growths that can't be surgically removed. The topical ointment form of a drug called sirolimus may help treat acnelike skin growths.
• Surgery. If a growth affects the ability of a specific organ — such as the kidney or heart — to function, the growth may be surgically removed. Sometimes surgery helps control seizures caused by brain growths that don't respond to medication. Surgical procedures such as dermabrasion or laser treatment may improve the appearance of skin growths.
• Various types of therapy. Early intervention services, such as occupational, physical or speech therapy, can help children with tuberous sclerosis who have special needs in these areas improve their ability to manage daily tasks and activities.
• Educational and vocational services. Early intervention and special needs services can help children with developmental delays and behavior issues adapt to the classroom so that they can meet their full potential. When needed, social, vocational and rehabilitation services may continue throughout life.
• Psychiatric and behavior management. Talking with a mental health provider may help children accept and adjust to living with this disorder. A mental health provider can also help address behavioral, social or emotional issues and recommend resources.

Ongoing monitoring

Tuberous sclerosis is a lifelong condition that requires careful monitoring and follow-up because many signs and symptoms may take years to develop. A schedule of regular follow-up monitoring throughout life may include tests similar to those done during diagnosis. Early identification of problems can help prevent complications.