When Your Child Has Tuberous Sclerosis Complex (TSC)

Tuberous sclerosis complex (TSC) causes problems with nerve cells. The nerve cells develop abnormal growths called hamartomas. The most common locations for hamartomas include the brain, eyes, heart, lungs, kidneys, and skin. Hamartomas are benign. But depending on their locations, they may cause complications. These can include seizures, skin problems, and learning disabilities. Your child’s healthcare provider can tell you more about TSC and the treatment options for your child. Outline of girl with head turned to side. Brain, lungs, heart, and kidneys are labeled inside body. Skin and eyes are labeled.

What are the causes of TSC?

TSC is caused by an abnormality (mutation) in specific genes that affect nerve growth. This mutation often happens by chance. It can also be passed down in families. If a diagnosis is confirmed, parents and siblings should be evaluated for the condition as well.

What are the symptoms of TSC?

Symptoms for TSC vary depending on the location of the hamartomas.

  • Brain hamartomas can cause:

    • Seizures

    • Developmental delay (problems with learning, reasoning, or behavior)

  • Eye hamartomas can cause:

    • Vision problems

  • Skin hamartomas can cause:

    • Light spots (hypopigmentation)

    • Thickened skin that feels like an orange peel

    • Acne-like spots on the face

    • Small fleshy tumors around the toenails or fingernails 

  • Heart hamartomas can cause:

    • Irregular heartbeat

  • Kidney hamartomas can cause:

    • Abnormal cell development that leads to high blood pressure or decreased kidney function 

  • Lung hamartomas happen only in girls and can cause:

    • Breathing problems

How is TSC diagnosed?

Your child will likely see a pediatric neurologist for diagnosis and treatment. This is a healthcare provider who specializes in neurologic problems. If TSC is suspected, the following may be done:

  • Neurologic exam to check how well your child’s nervous system is working. During the exam, the healthcare provider checks your child’s muscle strength, balance, coordination, and reflexes. He or she also checks skills, such as vision, memory, and hearing. In addition, the healthcare provider checks for hamartomas on the skin.

  • Skin exam to identify the lesions that are characteristic of TSC.  

  • Eye exam to identify the lesions that are characteristic of TSC. 

  • Health history to learn more about your child’s symptoms, other health problems, and family medical history.

  • Imaging tests, such as an MRI or CT scan to show detailed pictures of the brain and check for areas of abnormal cells or tumors. Ultrasound is also helpful in identifying lesions in the heart, liver, and kidney. 

  • Genetic tests to check for the mutation.

How is TSC treated?

Treatment for TSC varies depending on your child’s needs. Possible treatments include:

  • Regular visits to the healthcare provider to monitor your child’s health and to perform routine testing. For instance, if your child has hamartomas located in the heart, he or she may need tests to check for problems such as an irregular heartbeat.

  • Special education to help children manage symptoms of developmental delay.

  • Supportive care, such as speech, physical, or occupational therapy.

  • Medicines to control problems, such as seizures.

  • Surgery to remove any tumors or correct any skin lesions.

What are the long-term concerns?

TSC is a lifelong condition that needs to be managed. The outcome for your child varies depending on the severity of his or her condition. Some children can be as active and independent as other children. Others may need more treatment and supportive care. There is also some risk for the development of cancer. Work closely with your child’s healthcare provider and the rest of the healthcare team to learn the best ways to help your child.

Coping with your child’s condition

A positive outlook helps while supporting your child. Encourage your child to be active and to try new things. Consider counseling, which can help you and your child deal with any worries or concerns. And seek help from your friends, community, and support groups. The more you learn about your child’s condition and its treatments, the more in control you may feel. For more information about tuberous sclerosis, start by contacting The Tuberous Sclerosis Alliance at www.tsalliance.org.


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