Your Child's Neurofibromatosis Appointment

You should expect to see your NF doctor at least once a year. Sometimes it is important to follow up more often.

Neurofibromatosis type 1

The evaluations conducted at your child's clinic appointments will vary depending on their age. Here's what you can expect the medical team to do at each appointment:

Ages 1 to 5 years

  • Check the long bones for signs of fracture or bowing
  • Monitor developmental milestones and performance in preschool
  • Conduct an eye exam to monitor for development of optic pathway glioma
  • Check blood pressure
  • Conduct a neurological exam
  • Assess family members for signs of NF

Ages 6 to 14 years

  • Monitor performance in school.
  • May recommend testing for learning disabilities or hyperactivity if indicated
  • Check for scoliosis
  • Continue eye exams
  • Conduct neurological exam
  • Assess height, weight and puberty status
  • Discuss self-esteem and relationships with friends and classmates.

Ages 15 to 20 years

  • Monitor for changes in appearance of neurofibromas
  • Conduct neurological exam.
  • Continue to talk about NF, relationships with friends and self-esteem
  • Discuss inheritance of NF and likelihood of having a child with NF


  • Look for changes in tumors, as these could be a sign of cancer
  • Monitor appearance of headaches, weakness, pain, or changes in sensation
  • Check blood pressure
  • Conduct neurological exam

Neurofibromatosis type 2

Appointments for those with NF2 will be more similar throughout the years. You can expect the medical team to:

  • Monitor hearing function with hearing tests
  • Conduct neurological exam
  • Conduct MRI of brain and entire spinal cord annually
  • Conduct eye exam to check for cataracts and other retinal abnormalities
  • Recommend the patient learn sign language or alternative forms of communication
  • Discuss how NF2 is inherited.
  • Discuss potential impact of NF2 on career and family.
  • Assess resources available and the need for assistance with daily living
  • Evaluate other family members for vestibular tumors