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How doctors monitor NF1

How doctors monitor NF1
Type of exam or check What the doctor will do Why it's important
Physical exam (every year)

Check for new or changing growths or tumors.

Check for high blood pressure.

Measure height, weight, and head size.

Check that the bones in the arms, legs, and back look normal.
NF1 can cause problems with the way the body forms and grows. It can also cause high blood pressure, which can lead to heart disease or other problems.
Eye exam (every year) A full eye exam, including a vision check. NF1 can cause tumors to form on the nerves going to the eye. This can affect vision.
Check for early puberty (every year) Check for signs of early puberty, such as:
  • Hair growth under the arms or between the legs
  • Budding breasts (in females)
  • Growth of the penis or testicles (in males)
Tumors caused by NF1 can press on or damage the part of the brain that controls the timing of puberty.
Check on learning and memory (every year) Check that the child has gone through the normal stages of learning for their age. Check for learning problems, including attention deficit hyperactivity disorder (also called "ADHD"). If the child has any learning problems, it's important to catch and treat them early.
Review school progress (after child reaches school age) If progress in school is not going as it should, the doctor can recommend certain tests to find out what the problem is. If the child has problems in school, there are often programs, special classes, and tutors that can help.
Check on large or complex skin growths (every year) The doctor will ask the child whether any of the growths on their skin have grown or started to hurt more. This is especially important during the teenage years. Abnormal growths on the skin caused by NF1 can sometimes turn into cancer.
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