Neurocutaneous Syndromes

Neurocutaneous Syndromes

Neurocutaneous syndromes are rare genetic disorders that can cause tumors in the brain, spinal cord, organs, skin and skeletal bones. This chronic medical condition requires a multidisciplinary approach that you’ll find at Oklahoma Children’s Hospital OU Health in Oklahoma City.

Comprehensive Care for Neurocutaneous Syndromes

Take advantage of Oklahoma’s only specialized neurocutaneous program, where you can meet all your care needs at one central location. You’ll work with a multidisciplinary team of specialists who provide individualized and comprehensive care for your child’s specific condition. Your child will benefit from top-level care from these specialists who focus on early intervention and prevention practices to improve quality of life.

Request an Appointment or Second Opinion

Request an appointment and meet with the specialists from the pediatric neurocutaneous syndromes program at Oklahoma Children’s Hospital OU Health in Oklahoma City.

Call (405) 271-2244

Caring for Complex Neurocutaneous Conditions

When you choose Oklahoma Children’s Hospital to help care for your child, you gain access to a diverse team of experts who diagnose, treat and help manage a wide range of complex neurocutaneous conditions such as:

  • Neurofibromatosis (NF) NF I, NF II, and schwannomatosis
  • Tuberous sclerosis
  • Von Hippel Lindau

Learn more about neurocutaneous syndromes in children.

Thorough Evaluation & Diagnosis

Gain clarity about your child’s condition from diagnostic testing and get quick results from our multiple onsite scientific laboratories at OU Health. You can count on receiving accurate results that support your child’s personalized plan for care and treatment.

Your child participates in an evaluation that may include one or more diagnostic or imaging tests, such as:

After comprehensive evaluation and testing, your multidisciplinary team meets to identify the best path forward for your child and their specific diagnosis.

Leading-edge Treatments

You’ll benefit from the newest innovative treatments and clinical trials available at the specialized neurocutaneous program at Oklahoma Children’s Hospital. Your care team provides comprehensive and holistic care that implements the program’s tools and treatments at the forefront of scientific development.

Neurocutaneous syndromes can involve many parts of the body. To ensure optimal treatment, the neurocutaneous syndromes clinic brings specialists from various fields to provide individualized and targeted care for your child’s specific condition.

As part of the family-centered care approach, your child’s specific condition and needs will determine your care team, which may include specialists from various fields, including:

  • Genetics – provides medical management and performs testing, evaluation and surveillance, along with genetic counseling to learn more about disease progression, inheritance patterns and reproductive questions
  • Psychology – performs neurocognitive screening for cognitive impairment and psychiatric disorders associated with neurocutaneous syndromes such as attention deficit hyperactivity disorder (ADHD), learning disabilities, behavioral problems, anxiety and depression. Assists with emotional difficulties associated with the presence and treatment of neurocutaneous syndromes.
  • Physical therapy – evaluates motor function, coordination and strength, and identifies and treats gait abnormalities caused by neurocutaneous conditions.
  • Neurology – provides management for conditions related to neurocutaneous syndromes such as headaches, seizures, epilepsy or neuropathy
  • Neuro-oncology – provides tumor management and targeted therapy and manages benign and malignant brain and other tumors with a highly individualized approach
  • Neurosurgery – provides surgical procedures, such as tumor resection or ablation, to address tumors and their effects on the brain, spinal cord or nerves.

Your child’s individualized plan depends on their symptoms, age and general health. Your child’s healthcare providers work to manage symptoms, prevent or lessen problems and make the most of your child’s abilities.

Research & Clinical Trials for Neurocutaneous Syndromes

At Oklahoma Children’s Hospital, you can access the latest research and innovative clinical trials available at OU Health. Your child may qualify for developing new investigational treatments and gain access to the latest early-stage investigational drugs not yet widely available. Ask your doctor about the available clinical trials and determine if your child qualifies to participate.

Pediatric Neurocutaneous Specialists in Oklahoma

At Oklahoma Children’s Hospital, you and your child benefit from the specialized and comprehensive support of your Oklahoma Children’s Hospital pediatric neurocutaneous syndrome team that focuses on early intervention management and optimal quality of life.

The pediatric neurocutaneous clinic at Oklahoma Children’s Hospital brings together medical specialists from many healthcare disciplines who work together to help you and your child. Among the highly trained and extensively experienced members of your multidisciplinary team, you may work with pediatric neurology, genetics, pediatric neuro-oncology, pediatric psychology, pediatric psychiatry, pediatric neurosurgery and physical therapy specialists.

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