We work collaboratively with specialists throughout our hospital to provide comprehensive care for your child’s genetic condition.
The Neurocutaneous Disorders Clinic at Johns Hopkins All Children’s Hospital sees patients with genetic conditions affecting the nerves and skin, such as neurofibromatosis and tuberous sclerosis. Led by Stacie Stapleton, M.D., director of pediatric neuro-oncology at Johns Hopkins All Children’s, the Neurocutaneous Disorders Clinic consists of a multidisciplinary team of specialists from neurology, neuro-oncology, neuropsychology and genetics.
How Our Clinic Works
Our dedicated team provides care that is as comprehensive as it is compassionate. Patients visiting our clinic are evaluated by several specialties throughout our hospital, including:
- Neurology. Patients meet with a neurologist to asses any neurological symptoms.
- Neuro-oncology. A neuro-oncologist will evaluate the patient for tumor risks and discuss a management plan.
- Neuropsychology. A neuropsychologist will evaluate appropriate psychosocial development and developmental stages.
- Genetics. After meeting with a genetic counselor to review the patient’s medical history and obtain a complete three-generation family tree, Melissa Crenshaw, M.D., medical director of the clinical genetics program, will recommend genetic testing such as chromosomal, metabolic or DNA testing. For DNA and chromosomal testing, insurance approval is obtained before testing. Samples will then be taken at the lab. Results are typically returned within several weeks of the patient’s initial visit. Once results are received, our team will review the results with the patient/family and review recommendations for the child’s treatment.
After the initial clinic visit, patients are usually seen for follow-up appointments every six months to one year or as needed, depending on your child’s condition. We coordinate directly with the child’s regular physician or specialist throughout the patient’s care.
Conditions We Treat
Our team of specialists treats a variety of conditions, including:
- Sturge-Weber syndrome
- Tuberous sclerosis
The Neurocutaneous Disorders Clinic sees patients on the second and fourth Mondays of the month. The clinic is located in Johns Hopkins All Children’s Outpatient Care Center on the main campus in St. Petersburg, Florida.