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Neurocutaneous Syndromes

Nemours Center for Cancer and Blood Disorders in the Delaware Valley and Florida

Locations & Doctors Who Treat Neurocutaneous Syndromes

 
Delaware

Wilmington

Nemours/Alfred I. duPont Hospital for Children

1600 Rockland Road
Wilmington, DE 19803
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For Appointments: (800) 416-4441

Doctors Who Treat Neurocutaneous Syndromes at This Location

 
New Jersey

Voorhees

Nemours duPont Pediatrics, Voorhees

443 Laurel Oak Road
Therapy Services (Suite 200)
Pediatric Specialty Services (Suite 230)
Voorhees, NJ 08043
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For Appointments: (800) 416-4441

Hours: Fourth Friday each month; 9 a.m. to 4 p.m.
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Doctors Who Treat Neurocutaneous Syndromes at This Location

 
Pennsylvania

Philadelphia

Nemours duPont Pediatrics, Philadelphia

833 Chestnut St. E., Suite 300
Philadelphia, PA 19107
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For Appointments: (800) 416-4441

Hours: Monday–Friday: 8 a.m. to 5 p.m.
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Doctors Who Treat Neurocutaneous Syndromes at This Location


Lancaster

Nemours duPont Pediatrics, Lancaster

2128 Embassy Drive, Suite A
Lancaster, PA 17603
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For Appointments: (800) 416-4441

Hours: Hours vary; please call
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Doctors Who Treat Neurocutaneous Syndromes at This Location

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Florida

Orlando

Nemours Children's Hospital, Orlando

13535 Nemours Parkway
Orlando, FL 32827
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For Appointments: (407) 650-7715

Doctors Who Treat Neurocutaneous Syndromes at This Location


Nemours Children's Specialty Care, Orlando

1717 S. Orange Ave.
Orlando, FL 32806
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For Appointments: (407) 650-7715

Hours: Monday–Friday, 8 a.m. to 5 p.m.
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Doctors Who Treat Neurocutaneous Syndromes at This Location

To find out which providers serve this location, please call the main number above.

Melbourne

Nemours Children's Specialty Care, Melbourne

1270 N. Wickham Road
Melbourne, FL 32935
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For Appointments: (407) 650-7715

Hours: Monday–Friday: 8 a.m. to 5 p.m.
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Doctors Who Treat Neurocutaneous Syndromes at This Location

To find out which providers serve this location, please call the main number above.

Jacksonville

Nemours Children's Specialty Care, Jacksonville

807 Children’s Way
Jacksonville, FL 32207
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For Appointments: (904) 697-3789

Hours: Monday–Friday, 8 a.m. to 5 p.m.
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Doctors Who Treat Neurocutaneous Syndromes at This Location


Pensacola

Nemours Children's Specialty Care, Pensacola

5153 N. Ninth Ave.
Pensacola, FL 32504
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For Appointments: (850) 505-4790

Hours: Monday–Friday, 8 a.m. to 5 p.m. (Central Time)
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Doctors Who Treat Neurocutaneous Syndromes at This Location

About Neurocutaneous Syndromes

Neurocutaneous syndromes in children represent a large group of rare neurologic disorders that affect the central nervous system (brain and spinal cord) and the peripheral nervous system (nerves that branch out from the spinal cord to the rest of the body). Neurocutaneous syndromes are congenital (present at birth) but not always diagnosed at birth.

Marked by tumor growth in the brain, spinal cord, organs, bones and/or skin (skin being the most common in children), neurocutaneous syndromes are complex, lifelong conditions that change and manifest differently during a child’s growth and development.

Neurocutaneous syndromes are complex and difficult to diagnose. That’s why at the Nemours Center for Cancer and Blood Disorders, our experienced pediatric cancer and blood disorder teams and researchers work together with other top specialists to care for children with neurocutaneous disorders. Among many other forms, we treat the three most common pediatric neurocutaneous syndromes: neurofibromatosis, tuberous sclerosis and Sturge-Weber disease.


Types of Neurocutaneous Syndromes We Treat

There are many different kinds of neurocutaneous syndromes in children, and while there is no cure for these conditions, appropriate treatment can help manage symptoms.

 
Neurofibromatosis (NF)

Neurofibromatosis is a genetic disorder that can cause tumors — mostly low-grade (noncancerous) but sometimes malignant (cancerous) — to grow anywhere in the nervous system. There are two main types of neurofibromatoses, referred to as “neurofibromatosis type 1” (NF1) and “neurofibromatosis type 2” (NF2), depending on the location and type of tumor that develops. Hyperactivity and learning problems can result from the neurofibromatoses. 

 
Tuberous Sclerosis

Tuberous sclerosis occurs when tuber-shaped tumors appear in the brain or the retina (the light-sensing part of the eye that sends images to the brain). This neurocutaneous condition can affect many different organs in the body, the skin and skeletal bones. Tuberous sclerosis can cause developmental delays, intellectual disabilities, learning problems and seizures.

 
Sturge-Weber Disease

The most common type of Sturge-Weber disease involves malformations in the brain and skin (mainly the face) and sometimes glaucoma (increased pressure within the eye). The disease rarely affects other organs in the body. Neurologic abnormalities such as developmental delay (motor and cognitive skills) may occur.

 
Other Types of Neurocutaneous Syndromes We Treat
Other types of neurocutaneous syndromes in children include:
  • ataxia-telangiectasia (a progressive degenerative disease involving many major body systems)
  • von Hippel-Lindau disease (a genetic disorder involving the abnormal growth of blood vessels)

Diagnosing Neurocutaneous Syndromes in Children

Signs & Symptoms of Neurocutaneous Syndromes

Symptoms of neurocutaneous syndromes, like neurofibromatosis, in children vary widely depending on the condition and how they manifest over time. Symptoms can be mild to severe. The more common types can present with tan or red birthmarks (referred to as “café-au-lait spots” and “port-wine stains”), usually on the forehead, face and neck. Benign growths on the iris (the colored part of the eye), hearing loss, scoliosis (spine curvature), seizures, headaches, facial and body weakness can also occur. 


Testing & Evaluations

If your child has a possible neurocutaneous syndrome, Nemours’ experienced teams work together to appropriately diagnose and stage the disease through a variety of tests and procedures, including:

  • thorough physical examination and medical history
  • eye exams
  • blood tests
  • medical imaging (X-ray, CT or “CAT” scan, MRI)
  • electroencephalogram (EEG)
  • diagnostic biopsy (via surgery or minimally invasive interventional radiology)

Treating & Caring for Children With Neurocutaneous Syndromes

Your Child's Comprehensive Pediatric Hematology Care Team

If we discover a neurocutaneous syndrome like pediatric neurofibromatosis, our multidisciplinary (collaborative) team plans the most effective treatment personalized to your child’s needs. In addition to an experienced, compassionate nurse coordinator (who provides your child and family support, education and care coordination), Nemours’ pediatric blood disorder and cancer teams include:

  • hematologists (blood disorder specialists)
  • oncologists (cancer doctors)
  • neurologists (specialists in brain and spinal cord disorders)
  • surgeons (neurosurgeons and orthopedic surgeons) 
  • ophthalmologists (eye specialists)
  • dermatologists (skin doctors)
  • pathologists (diagnose diseases by examining body tissues, fluids and organs)
  • geneticists (perform genetic counseling and testing)
  • chemotherapists (specialists in chemotherapy treatment)
  • radiologists (diagnose diseases through medical imaging)
  • interventional radiologists (perform image-guided minimally invasive procedures)
  • behavioral health specialists (psychologists and psychiatrists)
  • registered dietitians (nutrition specialists)
  • hematology nurses (registered nurses specializing in blood disorders in children)

Your care team is here to provide your family with ongoing support and follow-up. We always include you in the entire process, because we truly believe in the healing power of families, and that you know your child best. 

Learn More About Nemours’ Pediatric Hematology Care Teams in Your Area »


Innovative Treatment for Pediatric Neurocutaneous Syndromes at Nemours

Neurocutaneous syndromes in children can be progressive, which means they might advance and change over time. There is no cure for these lifelong diseases, and treatments depend on the symptoms and resulting medical problems caused by or related to the disease.

Treatments might include:

For your child’s overall health and wellness, we also prescribe pain management services, palliative care (to manage physical symptoms resulting from the disease or surgery) and integrative medicine (massage, aqua therapy, biofeedback, yoga, meditation and more). 

Learn More About Pediatric Hematology Treatment at Nemours »

Additional Resources & Support for Families

 
Nemours Support Services

Dealing with a complex medical condition like a blood disorder is difficult for your child and family. But you don’t have to go through it alone. Nemours provides an array of support services that begin on the very first day we meet, and continues throughout your journey because at Nemours, your child and family become part of our own.

Our services include: 
  • patient and family education
  • social work
  • mental health counseling
  • Child Life services
  • creative therapy
  • support groups
 
Trusted National Neurocutaneous Syndromes Websites

Children’s Tumor Foundation: This website raises funds to help cure children’s tumors, including neurofibromatosis, through research. Gain inspiration and insights reading about brave children and teens living with neurocutaneous syndromes.

 
General Blood Disorders Information & Education

National Heart, Lung, and Blood Institute: The institute is part of the Department of Health and Human Services, and promotes the research, prevention and treatment of heart, lung and blood diseases.

National Institutes of Health: The institute provides a vast amount of information on diseases, treatments and research, including the informative site, Medline Plus. 

Appointments & Referrals

Delaware, Pennsylvania & New Jersey

(800) 416-4441


Florida
Jacksonville Area

(904) 697-3789

Orlando Area

(407) 650-7715

Pensacola Area

(850) 505-4790

Learn About Our Locations »


International
Patients

+1 (302) 651-4993

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