Neurocutaneous syndromes are rare neurologic disorders that affect the central nervous system due to tumors (cancer or non-cancer) that develop in the brain, spinal cord, organs, bones and skin. Although children are born with these syndromes, they may not be diagnosed until tumors can be seen on the skin or they cause problems with a child’s function. The oncologists (cancer doctors) in our Nemours Center for Cancer and Blood Disorders work closely with Nemours experts in neurology and orthopedics to find the cause of your child’s symptoms. Since tumors grow and change as your child develops, our experts monitor and address each issue. Although there’s no cure, our specially trained care teams are here to help your child and family as you learn to manage this lifelong condition.
Renowned Experts in One Pediatric Health System
Types of Neurocutaneous Syndromes We Treat
We see a full spectrum of neurocutaneous syndromes in children of all ages. The conditions we treat vary depending on the location and providers selected. Don’t see a condition listed? Call us.
- ataxia-telangiectasia or “A-T”
- Sturge-Weber syndrome
- tuberous sclerosis or “TS”
- von Hippel-Lindau syndrome or “VHL”
Services We Offer for Neurocutaneous Syndromes
We offer a variety of diagnostic and treatment services, which may vary depending on the condition or location, including:
- chemotherapy (cancer medicines) if tumors become cancer
- eye exams by ophthalmologists to monitor or treat glaucoma or harmless red veins
- genetic counseling since some syndromes are inherited (passed from parent to child)
- integrative medicine offers non-medical therapies like massage and yoga
- interventional radiology to biopsy (take a sample of) tumors
- neurology care from specialists in the brain and spinal cord
- pain management for post-surgical pain, headaches and disease symptoms
- orthopedic care since some syndromes cause skeletal problems as children grow
- palliative care helps with symptoms and offers support for your child and family
- plastic surgery to remove port-wine stain or other procedures
- physical medicine and rehabilitation offers physical, occupational and speech therapy
- psychology and psychiatry offer support services for your child and family
- proton therapy an advanced form of radiation therapy
- radiation therapy to target tumors if they become cancer
- radiology (medical imaging) such as X-rays, CT scans and MRIs
- surgery by board-certified pediatric neurosurgeons to remove tumors
Why Choose Us for Neurocutaneous Syndrome Care
Our Nemours Center for Cancer and Blood Disorders (or “NCCBD”) offers children renowned oncology (cancer) and neurology (brain and spinal cord) care that includes extensive experience in the these rare conditions. And since neurocutaneous syndromes can develop in many different ways as your child grows, we coordinate our care to provide a personal treatment plan for your child — not a standard, one-size approach. We also offer:
- continuous monitoring and follow-ups to anticipate and treat symptoms over time
- collaborations with our affiliates for the most advanced treatment options
- supportive services for your child and family today, and for the long term
Regional Neurocutaneous Syndrome Highlights
Services, programs, facilities and care teams differ at each location. Call for details.
We offer complete care for kids with neurocutaneous syndromes at Nemours/Alfred I. duPont Hospital for Children (Wilmington, Del.) and outpatient appointments at select Nemours duPont Pediatrics locations.
We also collaborate with the National Cancer Institute (NCI)-designated Helen F. Graham Cancer Center at Christiana Care (in Newark, Del.) and the Sidney Kimmel Cancer Center at Thomas Jefferson University (in Philadelphia).
Our Palliative and Supportive Care Program located at duPont Hospital for Children (Wilmington, Del.) provides compassionate care for families and children coping with life-threatening or life-limiting conditions.
We offer care for kids with neurocutaneous syndromes at Nemours Children’s Hospital (Orlando) and outpatient appointments at select Nemours Children’s Specialty Care locations.
We offer proton therapy as part of our collaboration with UF Health/Shands , the nation’s largest proton therapy provider and a State of Florida Cancer Center of Excellence (and the only one in the Southeast).
We offer complete care for kids with neurocutaneous syndromes at Nemours Children’s Specialty Care, Jacksonville working with our affiliates Wolfson Children’s Hospital, University of Florida College of Medicine-Jacksonville, UF Health/Shands Hospital and Mayo Clinic Florida. Outpatient and follow-up appointments are available at select Nemours Children’s Specialty Care locations.
Nemours specialists provide the neurology care at the Stys Neuroscience Institute at our affiliate, named one of the best children’s hospitals in the country for neurology and neurosurgery by U.S. News & World Report.
We’re also part of an integrated pediatric program with UF Health/Shands , the nation’s largest proton therapy provider and a State of Florida Cancer Center of Excellence.