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Bumps along the arms or legs that look like joints but aren 'tDeformed body parts (including the face)A curved spine or backbone (called "scoliosis " �)Bones that break easilyShort height for age
NF1 can also cause tumors to form inside the brain, around the nerves that connect the brain to the eye, and in other parts of the body. Some of these tumors can become cancer. � �
Should I take my child to see a doctor or nurse? " � Yes. If your child develops any of the signs or symptoms listed above, take him or her to see the doctor or nurse. � �
Will my child need tests? " � Maybe. If the doctor or nurse suspects your child has NF1, he or she will do an exam and ask you questions. Doctors can diagnose NF1 based on the results of the exam. � �
There is a blood test to check for the genetic problem that causes NF1. But doctors can diagnose NF1 without that test, so it is not always needed. If your child does have the genetic test, keep in mind that a child can have the genetic problem that causes NF1 but have only mild symptoms. � �
How is NF1 treated? " � The most important part of treatment involves checking for changes that could mean NF1 is causing problems. Children with NF1 must see the doctor at least once a year and have certain tests (table 1). If NF1 starts causing certain problems, those problems must be treated. For example, if a skin growth gets too big or starts causing pain, surgery can be done to remove the growth. � �
What if my child wants to have children? " � There is a chance your child would have children with the same problem. When your child grows up, he or she should talk to a doctor to find out what the risks might be. � �
What will my childs life be like? " � Your child will need medical care throughout his or her life. It's best if he or she is treated by a team of experts who have experience with NF1. As your child ages, he or she will probably develop more neurofibromas and other health problems caused by NF1. Many of these problems can be dealt with, but some are very serious. � �
All topics are updated as new evidence becomes available and our peer review process is complete. � �
This topic retrieved from UpToDate on: Nov 04, 2014. � �
Topic 87115 Version 2.0 � �
Release: 22.8 - C22.206 � �
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table 1How doctors monitor NF1View Largetable 1How doctors monitor NF1
Type of exam or check
What the doctor will do
Why its 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 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 girls)
Growth of the penis or testicles (in boys)
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 his or her age. Check for learning problems, including attention deficit 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 and 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 his or her 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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