Treating Tuberous Sclerosis in Children

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Learning your child has tuberous sclerosis complex (TSC) is something you never imagined hearing. Most people have never heard of it. But rest assured. We know it well and care for dozens of children with this condition. 

Treating Tuberous Sclerosis in Children at UVA Children's

Each day in the U.S., 2 children are born with TSC. There is no cure for TSC. But we have many effective treatments. At UVA Children's, a neurologist will work with you and your family to guide you through a lifetime of care. This includes genetic counseling and planning. And if this condition runs in your family, everyone can come to the same place for treatment.

UVA Children's has 1 of only 2 TSC Clinics in Virginia recognized by the Tuberous Sclerosis Alliance.

What to Expect from a TSC Diagnosis

Understandably, you have a lot of questions and fears.

You may have learned your child has TSC because a tumor on their heart showed up in a prenatal ultrasound. These heart tumors usually shrink on their own. Or your infant or child may have brain tumors. These can lead to epileptic seizures, developmental delays, or autism spectrum disorder.

 TSC affects everyone differently. A person can experience effects:

  • So mild, they don't even know they have it
  • So serious, they have an intellectual disability

No matter how this condition impacts your child or family, you’ll find the expertise and resources you’ll need at UVA Children's.

The Role of Genetics for TSC

Most people get TSC as the result of a spontaneous gene mutation before they’re born. A glitch in a gene tells the body's cells to reproduce when they shouldn’t.

But TSC can run in families. If one parent has this condition, children have a 50% chance of having it, too.

Some people only find out they have TSC after their child gets diagnosed with a more severe case. Our genetic counselors can help you understand what this means for your family.

 

Brain Surgery Frees Toddler from Seizures with Tuberous Sclerosis

Remarkable Cure for Seizures

For Ava, no medications could stop her seizures caused by tuberous sclerosis. But after brain surgery, Ava went from 20 to 0 seizures a day.

Read Ava's Story

Why Your Child Needs a Whole Team

Tuberous sclerosis causes lesions and benign tumors (not cancerous) to grow throughout the body. They affect different body parts, mostly the:

  • Brain
  • Eyes
  • Heart
  • Kidney
  • Skin
  • Lungs

That's why you need experts to do specialized screening of affected parts of the body.

We strive to make tuberous sclerosis treatment as convenient as possible. You and your child meet with a neurologist with expertise in TSC. If needed, you can see a kidney expert and child development specialist during the same clinic visit.  

Lifelong Care at a United Tuberous Sclerosis Clinic

At UVA Children's, your child can get constant, consistent care from childhood through adulthood. This way we can make sure to track and treat whatever comes.

It’s important to keep a close watch on TSC throughout your child’s life. As your child gets older, their condition may lead to tumors on the skin or kidneys. In adults, TSC tumors can show up in the kidneys or lungs and make these organs not function well.

At UVA Health, we’ll keep a close watch on changes and offer the full array of treatments, including:

  • Imaging to see if tumors are changing in size
  • Medications 
  • Surgery
  • Laser surgery or topical medication for skin lesions
  • Speech, occupational, or physical therapy for children with developmental delays

Advances Help Control Impact of Tuberous Sclerosis

Medical research continues to improve our knowledge of TSC. We now have medicines developed just for TSC. This helps us prevent some of the serious effects. The last decade has seen many advances, including:

  • FDA-approved drugs to shrink and stop the growth of tumors in the brain and kidney
  • FDA-approved medicines to help stop epileptic seizures
  • Surgery, in rare cases, to remove brain tumors causing seizures
  • Treatment for infantile spasms

Talk With Someone Who Understands

The TSC Alliance can connect you with volunteers in Virginia who can offer support and share their experiences. The TSC Alliance has both closed and open social media sites for discussing questions with others.