We work collaboratively with specialists throughout the hospital to provide comprehensive care for your child’s genetic condition.
Patients with genetic conditions affecting the nerves and skin such as neurofibromatosis and tuberous sclerosis, are seen in our multidisciplinary Neurocutaneous Disorders Clinic. Patients visiting this clinic are evaluated by specialists from neurology, neuro-oncology, neuro-psychology and genetics.
After meeting first with a genetic counselor to review your child’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 your child’s initial visit. Once results are received, we will review the results with you and review recommendations for your child’s treatment.
The conditions we treat in the clinic include:
- Tuberous sclerosis
After the initial visit to the clinic, we usually see patients for follow-up appointments every six months to one year or as needed, depending on your child’s condition. We coordinate directly with your child’s regular physician or specialist throughout your child’s care.
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.
For information on clinic hours and to make an appointment, call 727-767-3675.