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

Adults

• 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