Neurofibromatosis

At SSM Health Cardinal Glennon Children’s Hospital, we have specialists trained in the diagnosis and treatment of pediatric neurofibromatosis. Neurofibromatosis (NF) is a genetic disorder that causes non-cancerous growth to develop on any nerve ending throughout the body. This hereditary condition usually presents itself during childhood.

If your child has been diagnosed with neurofibromatosis a multidisciplinary care team will be put in place to work through their diagnosis and long-term treatment. Our SLUCare Physician Group doctors work with nurses, social workers, counselors and other specialists to answer all of your questions.

Providing trusted neurofibromatosis care since 1984 - our ultimate goal is to help your child achieve their highest level of physical, developmental and psychological potential.

What is Neurofibromatosis?

NF is used to describe a set of  genetic disorders that result in the growth of tumors derived from nerve cells. These tumors can develop anywhere in the nervous system, including the brain, spinal cord and nerves. Neurofibromatosis is usually diagnosed in childhood or early adulthood.

There are two major types of NF:

  • NF1: affects one in 3,000 births, causing problems with skin pigment, tumors, bone abnormalities and frequent learning disabilities
  • NF2: a separate genetic disorder, causing tumors of the nerves responsible for hearing (this can result in hearing loss)

Neurofibromatosis is often an inherited condition and can affect many family members. However, some people with NF do not have a family history of the disorder. Because of the familial nature of NF, we believe it is important to provide services for both children and adults in our neurofibromatosis clinic.

Signs & Symptoms of Neurofibromatosis

Complications of this disorder may include:

  • Vision or hearing impairments
  • Bone defects such as curvature of the spine
  • Learning disabilities
  • Seizures
  • Benign skin tumors
  • Possibly eye or other tumors

Diagnosing NF in Children

Our physicians can typically diagnose NF through a physical exam. Certain physical features, such as light brown spots on the skin resembling birthmarks, freckling, ocular signs and bones changes, can be an immediate indicator of neurofibromatosis.

Regular medical evaluations are a great tool in early detection and treatment of complications of NF. While NF is rarely life-threatening it is important to stay on top of your child’s condition.

Treating NF in Children

During your child’s treatment, our geneticists will collaborate closely with our pediatric oncologists and other specialists to deliver the most advanced treatment methods. This multidisciplinary approach to care provides your child with tailored treatment for their condition.

Unfortunately, because neurofibromatosis is a genetic condition, there is no way to directly treat the condition. However, our team will continue to follow and manage the care of your child, quickly addressing and treating any medical concerns that may develop.

The NF Clinic at SSM Health Cardinal Glennon

The NF Clinic is the only one in Missouri providing comprehensive, collateral care for children suffering from neurofibromatosis. With us, you can schedule all of your child’s specialist appointments and tests at the same time. Your child’s care team works together, meeting after each clinic visit to discuss your child’s continuing care.

If needed, we also supply referrals to other experts in:

  • Critical care
  • Endocrinology (growth and hormones)
  • Pain management
  • Physical therapy and rehabilitation
  • Radiation therapy
  • Nutritional care

Our clinic is also actively involved in the Children’s Tumor Foundation’s national network of affiliate clinics. With this status, you can be assured that we are constantly providing the highest standard of care for children living with NF.

To make an appointment for your child, please call 314-577-5397. We see patients on the first, third and fifth Wednesday of each month in the ambulatory care clinic. Stay on top of your child’s health and visit with one of our specialists today.

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