care for children in a welcoming environment 

Neurofibromatosis is a genetic disorder that causes tumors to form on nerve tissue. 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.

Treatment for Neurofibromatosis focuses on early management of the disorder and the complications. We support you and your child, working with a team of specialists to develop a treatment with a individualized approach. 

Reasons for referral 

  • Multiple cafĂ© au lait macules/birthmarks
  • Ocular lisch nodules
  • Cutaneous or plexiform neurofibromas, malignant peripheral nerve sheath tumors
  • Personal or family history of optic or central nervous system glioma
  • Personal or family history of acoustic neuroma/schwannoma
  • Multiple meningiomas, gliomas
  • Family history of neurofibromatosis

what is the treatment? 

Depending on how your child is affected, there are different treatment options. Sometimes Neurofibromatosis results in tumors that may press on somewhere in the nervous system, and surgery can reduce symptoms. Some patients may benefit from other therapies.

Based on the diagnosis, the specialist team will work with you to develop the best care plan to help your child. 

Your Care Team 

We work with a multidisciplinary team of specialists to develop a personalized treatment plan tailored for each child's specific needs.

  • Audiology
  • Cardiology
  • Dermatology
  • Developmental pediatrics
  • Endocrinology
  • Ophthalmology
  • Oncology
  • Orthopedics
  • Otolargyngology
  • Physical Therapists
  • Neurology
  • Neuropsychology
  • Neuroradiology
  • Neurosurgery

 

Our Location

Randall Children's Hospital at Legacy Emanuel
Pediatric Development and Rehabilitation
2801 N. Gantenbein Ave., Suite 2225
Portland, OR 97227
Map/Directions
Phone: 503-413-4505




 

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