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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 occurs 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

  • Heart hamartomas can cause:

    • Irregular heartbeat

  • Kidney hamartomas can cause:

    • Abnormal cell development that leads to high blood pressure

  • Lung hamartomas occur 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 doctor 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 doctor 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 doctor checks for hamartomas on the skin.

  • 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.

  • 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 doctor 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.

  • Medications 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 require more treatment and supportive care. Work closely with your child’s doctor 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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