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.
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
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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