Tuberous sclerosis complex treatment
While there is no cure for TSC, doctors at Children’s Colorado can treat the variety of complications it causes. And because TSC is a lifelong condition, our care team is committed to regularly monitoring your child to ensure they are receiving the best possible treatments in a hospital designed just for kids.
Treatment depends widely on what part of the body TSC is affecting and how severely. Treatment options for the following complications may include:
Seizures and brain tumors
If your child is at risk of seizures due to brain tumors, we prescribe antiepileptic drugs. We also may prescribe everolimus (Afinitor®) to treat brain tumors known as subependymal giant cell astrocytomas (SEGA) and angiomyolipoma kidney tumors.
For behavioral problems, your child’s doctor may prescribe medications or suggest intervention programs including special schooling and occupational therapy. This can also benefit children with special needs and developmental delays caused by TSC.
We may observe the benign tumors until they grow larger and at that point suggest medications or procedures to control the tumors. In rare instances, we may suggest surgery to remove tumors from the kidneys if they appear to be cancerous.
Your child’s doctor may also recommend surgery for the three types of brain lesions (damaged tissue on the brain) caused by TSC, which are cortical tubers, subependymal nodules (SEN) and SEGA.
If tuberous sclerosis complex is affecting lung function and causing respiratory issues, we treat it with supplemental oxygen therapy. We might even suggest a lung transplant if the problem is very severe.
Why choose us for treatment of tuberous sclerosis complex?
Because the disease affects so many parts of the body, children with TSC often need to see doctors from several different specialties to get the best treatment. Here at Children’s Colorado, we have a multidisciplinary TSC program, which brings together all the relevant medical teams into one clinic, so your child can see everyone they need to see in one visit.
Our doctors are also very experienced in treating children with TSC, from moderate to the most severe cases. This is vital when dealing with a disease like TSC that results in such a variety of symptoms and complications. By collaborating with a team of experienced specialists, we can ensure that we address every complication associated with the disease.
Additionally, our hospital’s location on Anschutz Medical Campus enables us to provide comprehensive care with a focus on education and research for both children and adults. We collaborate with neurologists at the University of Colorado Hospital and School of Medicine to care for patients with TSC throughout childhood and into their adult life.
The Tuberous Sclerosis Clinic at Children’s Colorado
We created the Tuberous Sclerosis Clinic to address all the issues and complications for kids with TSC. Our multidisciplinary team provides medical, genetic, neuropsychological, dermatological and social support for children with TSC and their families.
During your first visit to the Clinic, your child will see a pediatric neurologist, dermatologist, genetic counselor and neuropsychologist. A social worker and community alliance volunteer will also provide supportive counseling and can assist patients and families with getting resources and support within the community. This appointment will last about three hours.
Our TSC Clinic partners with the TS Alliance to offer their TSC Clinic Ambassador Program. This program pairs a TS Alliance community volunteer with our Clinic to help families affected by TSC (especially those newly diagnosed) to deal with the emotional challenges of the disease. Clinic ambassadors share their personal experience with TSC, and provide local and regional resource information, including community activities.
Follow-up clinic for tuberous sclerosis
Our follow-up clinic provides ongoing care for your child’s medical, psychological and social needs. During yearly follow-up visits, our team will evaluate the progression of your child’s TSC and create a treatment plan to address any new physical or behavioral developments. Our social worker and community alliance volunteer will also provide supportive counseling and help your family get resources and support within the community. Follow-up visits last approximately three hours.
Sending medical records before your appointment
It is important that we review all medical records including any diagnostic tests prior to your visit. If you have records from outside Children's Colorado, please mail them to us prior to your child’s appointment. Please provide X-rays (MRI, etc.) on a CD and mail to:
Children's Hospital Colorado
Attn: Tuberous Sclerosis Clinic
13123 E. 16th Ave., Box B155
Aurora, CO 80045