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
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