Neurofibromatosis: How We Treat

How is neurofibromatosis (NF1) treated?

The Neurosciences Institute at Children's Hospital Colorado

There is no cure for neurofibromatosis because doctors and researchers cannot correct the underlying genetic cause. However, at Children’s Hospital Colorado, we follow and manage the care of our patients with NF1so that we can quickly address and treat any medical concerns that develop.

Many individuals have an uncomplicated course of NF1 and do not require much additional medical care. Our program follows the American Academy of Pediatrics’ guidelines with annual blood pressure checks, monitoring of growth and development, monitoring the spine for scoliosis and annual ophthalmology evaluations in our Eye Clinic. Individuals diagnosed with NF1 and those suspected of having NF1 are seen annually by our team.

Diagnosis and follow-up treatment

The Neurocutaneous Clinic within Clinical Genetics is the diagnostic clinic for NF1. Follow up in our Neurology or Genetics clinics includes monitoring for potential health and developmental concerns. If a concern is identified, we have specialists in the Eye Clinic, Neuro-Oncology, Orthopedics, Rehabilitation, Neurology and Neuropsychology departments, among others, who can help to manage and treat concerns.

Why choose Children’s Hospital Colorado for your child’s neurofibromatosis?

Physicians in our Neurofibromatosis Program have several decades of combined experience in diagnosing NF1. We offer genetic testing in a conservative and responsible manner with thorough counseling. Every year, we treat several hundred children with NF1. We see patients from Colorado, New Mexico, Arizona, Nebraska, Wyoming, Montana and South Dakota.

For diagnosed patients with extensive medical involvement, Children’s Colorado has a NF multidisciplinary clinic and a NF “mini” multidisciplinary clinic that both use a team-approach for management of NF1. In addition, our Neurofibromatosis Program is a member of the Children’s Tumor Foundation and our physicians participate in annual education clinics about NF1.