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It can be hard to find accurate information about some neurocutaneous syndromes simply because they’re relatively rare. Here at Boston Children’s Hospital, we understand these syndromes — and we know how to treat them.
How common are these syndromes?
They’re rare — their rate of occurrence ranges from 1 in 3,000 (neurofibromatosis) to 1 in close to 50,000 (tuberous sclerosis).
What causes neurocutaneous syndromes?
Tuberous sclerosis, neurofibromatosis and Sturge-Weber disease are all conditions that are congenital, which means that they’re present when your child is born.
What are the symptoms of neurocutaneous syndromes?
Symptoms of neurocutaneous syndromes vary with the condition. For detailed information about symptoms your child may have, please click one of the links below:
It may help you to remember that you and your family aren’t alone. Many families have been down this path, and there's a lot of support available here at Boston Children's for you and your family. Here are some of the ways we can help:
Patient education: From the first office visit, our nurses will be on hand to help answer any questions you may have — What kind of tests will my child need? What are the next steps in treatment? They will also reach out to you by phone, continuing the care and support you received while at Children’s.
Parent to parent: Want to talk with someone whose child has been treated for the same condition? We can often put you in touch with other families who can share with you their experience at Boston Children’s.
Faith-based support: If your child is in the hospital and you are in need of spiritual support, we will help connect you with the Boston Children’s chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.
Social work: A social worker can offer counseling and assistance with issues such as coping with your child’s diagnosis, stresses relating to contending with illness and dealing with financial difficulties.
Click here for all you need to know about:
What is the long-term outlook for my child?
Because there’s no cure for these syndromes, we focus on managing your child’s symptoms. The long-term outlook for your child depends on a few factors:
Every child is unique and your care team will work with you to develop a treatment plan that works for your family.
Will my child get better?
These syndromes are progressive conditions, which means that they will grow as your child grows. That said, we have many effective ways to manage your child’s symptoms.
For more information, see the Treatment section.
What do we do after treatment is over?
Your doctor may recommend a series of follow-up visits to check for complications and make sure that we’re managing your child’s condition effectively.
A typical follow-up visit may include some or all of the following:
Our entire staff is highly trained and experienced. And more importantly, we’re all dedicated to working with families — to make sure that your child is as comfortable as possible during treatment.
After your child is diagnosed with a Neurocutaneous syndrome, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.
Lots of parents find it helpful to write down questions as they arise – that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed. Here are some to get you started:
Q: What is a neurocutaneous syndrome?
A: Neurocutaneous syndrome is a broad term for a group of neurologic (brain, spine, and peripheral nerve) disorders that can cause tumors to grow inside your child’s brain, spinal cord, organs, skin and bones.
Q: Is there a specific syndrome that my child has?
A: Yes. The three most common types of neurocutaneous syndromes are:
Q: How common are these syndromes?
A: They’re rare — their rate of occurrence ranges from 1 in 3,000 (neurofibromatosis) to 1 in close to 50,000 (tuberous sclerosis).
Q: What causes neurocutaneous syndromes?
A: Tuberous sclerosis, neurofibromatosis, and Sturge-Weber disease are all conditions that are congenital, which means that they’re present when your child is born.
Q: What are the symptoms of neurocutaneous syndromes?
A: Symptoms of neurocutaneous syndromes vary with the condition. For detailed information about symptoms your child may have, please click one of the links below:
Q: What is the long-term outlook for my child?
A: Because there’s no cure for these syndromes, we focus on managing your child’s symptoms. The long-term outlook for your child depends on a few factors:
Q: Will my child get better?
A: These syndromes are progressive conditions, which means that they will grow as your child grows. That said, we have many effective ways to manage your child’s symptoms. For more information, see the Treatment & Care section.
Q: How do I know if my child has a neurocutaneous syndrome?
A: Tuberous sclerosis, neurofibromatosis and Sturge-Weber disease are congenital conditions, which means they are present when your child is born.
Depending on your child’s symptoms, however, and the type of syndrome, it may be some time before a diagnosis is made.
Q: How will my child’s syndrome be treated?
A: These syndromes are complicated conditions, and they affect different kids in different ways.
Because there is no cure for these syndromes — and they’re progressive conditions — we believe that treating your child’s symptoms is the most effective way to manage the disease.
Q: What makes Boston Children’s different?
A: Treatment for neurocutaneous syndromes — which sometimes includes surgery —can be intimidating for young children, so we’ve built our treatments around concepts that work for kids.
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.”