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Neurofibromatosis 
 
 

The neurofibromatosis specialty identifies, diagnoses and treats children with Neurofibromatosis (NF), a genetic disorder in the brain. Our ultimate goal is to help children achieve their highest level of physical, developmental and psychological potential. We have been providing trusted NF care since 1984.

Frequently Asked Questions

Meet the Team

Payment Options

Additional Resources

Contact Us

 

The NF team at SSM Cardinal Glennon is made of physicians, nurses, social workers, counselors and other specialists who work together to assess problems and plan treatment for each patient. Our team provides current medical information related to NF, and uses the latest diagnostic and treatment methods in caring for your child.

Our multidisciplinary clinic is the only one in Missouri where you can schedule all of your child’s specialist visits and tests in one convenient appointment. Our nurse coordinator schedules all appointments and tests for you, and our physicians work as a team, meeting after each clinic to discuss your child’s care.

We are proud to be a part of 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.

Frequently Asked Questions

  
What is Neurofibromatosis?

Type I Neurofibromatosis (NF I) is a common, unpredictable and sometimes progressive genetic condition. While many people have the condition their entire lives with no serious medical complications, NF I can cause a variety of medical problems.

Complications may include vision or hearing impairments, bone defects such as curvature of the spine, learning disabilities, seizures, benign skin tumors, and possibly eye or other tumors.

NF I affects about 1 in every 3,500 individuals, or about 100,000 people in the United States.  NF II is another, less common type of Neurofibromatosis, but it can cause similar complications.

How is NF diagnosed?

Physicians can diagnose NF by the presence of light brown spots on the skin resembling birthmarks, in combination with other findings.  Regular medical evaluations provide early detection and treatment of complications of NF. NF I is rarely life-threatening, and severe deformities are also rare.

How did my child get NF?

NF is often inherited 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 NF clinic.

Meet the Team

Our multidisciplinary clinic allows your child to be seen by many specialists, all in one convenient appointment time. The NF Clinic at Cardinal Glennon has access to pulmonology, gastroenterology and dental services as well as those listed here:

Thomas Geller, MD, NF Clinic Director - Neurology

M. Susan Heaney, MD - Pediatrics

Elizabeth Engel, MD - Orthopaedics

Bradley Davitt, MD - Ophthalmology

John Stith, MD - Otolaryngology

Richard Bucholz, MD, FACS - Nuerosurgery

Charles Andrus, MD - General Surgery

Joel Nadler, PhD - Psychology

Sarah Duncan, MS, CCC-A - Audiology

Lydia Johnson, RN, BSN - Nursing

Patricia Moore - Medical Social Work

Payment Options

Most insurance plans cover a child’s clinic visits. X-rays, lab work, and/or hearing evaluations are not included in the NF clinic charge, but are often covered by insurance as well. The clinic also accepts patients covered by Missouri Medicaid, Illinois Public Aid and the Bureau of Special Health Needs.

Additional Resources

Children’s Tumor Foundation

Missouri Chapter

Contact Us

To make an appointment, please call (314) 577-5397.  We see patients on the first, third and fifth Wednesday of each month in Cardinal Glennon's Ambulatory Clinic.

 


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