People with NF-1 will need regular physical exams to check their vision, blood pressure and spine. Sudden changes in the size of a neurofibroma, pain or weakness should be brought to your doctor’s attention immediately.
In young children, special attention should be given to growth, hearing, vision, development, long bones and the spine. In addition, parents should ask teachers whether their child is having trouble with schoolwork and if a special learning evaluation is needed.
In older children and young adults, plexiform neurofibromas need to be checked carefully.
Special scans of the brain, eyes and spine are often helpful in NF-1.
Because NF-1 causes spots and small tumors on the skin that can be seen, people with NF-1 may have to be braver than other people. Children with NF are sometimes isolated, rejected or teased. If this occurs, the best thing to do is to talk about NF with your family or the child’s friends and teachers.
If you are a parent of a child with NF, you should realize that your child might be frightened or angry about changes in his or her body. It is not helpful for you to pretend there is no problem. Simple, truthful and positive explanations such as, “You have a problem that causes spots and some bumps on your skin" or "You need to see a doctor regularly to make sure everything is OK," can be reassuring to your child. You should try to talk more in detail with teenagers and make sure they are dealing emotionally with their disorder. Set aside time to talk about self-esteem and relationships with friends.