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There are many ways you can help children and their families get the care they need.
If your child has just been diagnosed with tuberous sclerosis (TSC), you may be feeling overwhelmed, worried about your child's health and wondering what's in store for your family. We want you to know that you're not alone. Our Multi-Disciplinary Tuberous Sclerosis Program at Boston Children's Hospital brings together specialists from each of the different fields in which children with TSC may need care. We work as a team so that your child's treatment is well coordinated and so that your family can more easily navigate his course of treatment.
Unfortunately, there is no cure for TSC yet. But there are effective treatments for many of the symptoms. For example:
Many of the complications of TSC can be managed much more effectively if they're treated early. So we monitor your child carefully and work closely with your family to stay on the lookout for any symptoms that may come up. Because we have a team of experts from each of the specialty areas where children with TSC may have problems—and because each of them have experience in caring for children with TSC—we can anticipate the problems that your child may have and provide the best possible care for him.
Caring for children with developmental and behavioral disorders
Parents are often particularly concerned to learn that many children who have tuberous sclerosis also develop neurodevelopmental disorders, including autism spectrum disorders. Experts don't fully understand the connections between TSC and the developmental conditions, and why some children with TSC develop these conditions while others don't. But we know that early diagnosis and therapy can be enormously helpful to children with developmental disorders. So if your child is diagnosed with TSC, we will evaluate him carefully for these conditions and help your family access any therapies he may need.
ASDs, along with other neurodevelopmental disorders and learning disabilities, are very diverse conditions—not simply one-size-fits-all diagnoses. So Children's specialists perform in-depth evaluations to understand your child's unique strengths and challenges, and we make detailed recommendations about the types of therapy that may be helpful for him. Our tuberous sclerosis team takes a collaborative approach to assessing your child's developmental needs—involving specialists from Neurology, Developmental Medicine and Psychiatry—in order to conduct a thorough evaluation and make treatment recommendations.
Our group also includes an educational consultant, who provides crucial support to families in putting the plan for therapy into action. Most of the behavioral therapies and teaching approaches used to help children with developmental challenges are provided through programs run by your state and local school system. These include early intervention services for children under age 3 and special education services for children who are 3 and older. Our educational consultant can help your family find the services that are right for your child.
Some children also benefit from several related therapies, particularly speech-language therapy and occupational and physical therapy. At Children's, occupational and physical therapy are provided in the Occupational Therapy Service and Physical Therapy Department. Communication therapies are offered in the Children's Center for Communication Enhancement, which has developed many innovative strategies for helping children communicate to the very best of their abilities. The Center includes the Autism Language Program and the Augmentative Communication Program.
Often, some of the toughest TSC symptoms to manage are behavioral difficulties, like attention problems, hyperactivity, aggression, irritability or destructive behaviors including self-harm. Treating these symptoms is a crucial part of caring for children with TSC. Our team in the Multi-Disciplinary Tuberous Sclerosis Program includes a psychiatrist who is experienced in working with children who are having these sorts of problems. For many of these symptoms, medications are available that can be very helpful.
Treating seizures and epilepsy
Many children who have TSC develop epilepsy, a condition in which a child has unprovoked seizures. One type of seizures, infantile spasms, can start while your child is still an infant. We will talk with your family in detail about what to watch for so that if your child does start having seizures, we can begin treatment as early as possible.
There are several anti-epileptic medications that are particularly effective in treating infantile spasms in children with TSC. There are also other medications that can be used if your child goes on to develop other types of seizures.
The neurologists on our tuberous sclerosis team are experienced in treating seizures in children with TSC. We also draw on the extensive expertise and resources of the Epilepsy Center at Boston Children's.
Visit the Epilepsy page to learn more about treatments for children with epilepsy.
Treatments for skin lesions
For many children, it's important to treat skin lesions caused by TSC. In particular, lesions on the face (generally facial angiofibromas) can be troubling for many children. Removing them early, while the lesions are still small, can make them much easier to manage. A dermatologist on our tuberous sclerosis team can use a variety of treatments, including laser ablation.
It's possible that your child will be eligible to participate in one of our clinical trials at Children's. These studies are useful for a multitude of reasons: Some trials are designed to evaluate the effectiveness of a particular treatment; others help doctors to better understand how and why certain conditions occur.
Participation in any clinical trial is completely voluntary: We will take care to fully explain all elements of the treatment plan before the trial starts, and you may remove your child from the study at any time.
You can read about our research on treatments for children with TSC on the Research & Innovation tab. You can also find out more about clinical trials on the Children's clinical research page.
A diagnosis of tuberous sclerosis can feel overwhelming, and you probably have a lot of questions on your mind. Why did this happen to my child? Is he going to be okay? What do we do next?
Boston Children's Hospital's tuberous sclerosis team has a great deal of experience in working with families in your situation, and we're dedicated to supporting you as you cope with your child's diagnosis and navigate his course of care. We will talk with you in-depth about your child's condition and answer any questions you have.
This list outlines some of our resources at Children's and in the wider community that may be helpful to you:
Resources at Children's
On our Children's For Patients and Families site, you can read all about:
Resources in Massachusetts
If your child has developmental difficulties and you live in Massachusetts, these resources may be helpful to your family:
If you live outside of Massachusetts, our team can direct you to helpful resources.
National and international organizations and agencies
The Tuberous Sclerosis Alliance (TS Alliance) is a national organization dedicated to finding a cure for tuberous sclerosis while improving the lives of those affected. Two of their resources that may be particularly helpful to you are:
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”