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Neurofibromatosis type 2 (NF2) is a condition that makes certain nerve cells more likely to develop tumors. With NF2, the most common location for tumors is along the nerves in the ears (auditory nerves). This can lead to hearing loss and problems with balance. Tumors can also develop along nerves in the brain and spinal cord. Your child’s healthcare provider will tell you more about your child’s condition and treatment options for your child.
NF2 is caused by an abnormality (mutation) in specific genes that affect nerve growth. This mutation often occurs by chance. It can also be passed down in families. If a diagnosis is confirmed, parents and siblings should be evaluated for the condition as well.
Symptoms vary for each child. They may also be affected by the location of the tumors. Your child may have:
Ringing in the ears (tinnitus)
Problems with balance
Problems with vision
Numbness or tingling in the arms or legs
Your child will likely see a pediatric neurologist for diagnosis and treatment. This is a doctor who specializes in neurologic problems. If NF2 is suspected, the following may be done:
Neurologic exam to check how well your child’s nervous system is working. During the exam, the doctor checks your child’s muscle strength, balance, coordination, and reflexes. He or she also checks skills such as hearing or vision.
Health history to learn more about your child’s symptoms, other health problems, and family medical history.
Imaging tests such as an MRI or CT scan to check tumor size and location.
Genetic tests to check for the mutation.
Surgery to remove any tumors is the most common treatment. Surgery holds various risks and benefits that the doctor will discuss with you in detail. In rare cases, a tumor can become malignant (cancerous). This may require other treatments such as radiation or chemotherapy.
The outcome for your child varies depending on the severity of his or her condition. After treatment, many children can be as active and independent as other children. If a tumor was removed along the auditory nerve, your child may have permanent hearing loss after treatment. Ask your child’s doctor about supportive care that can help your child learn to manage his or her disability.
A positive outlook helps while supporting your child. Encourage your child to be active and to try new things. Consider counseling, which can help you and your child deal with any fears or concerns. And seek help from friends, community resources, and support groups. The more you learn about your child’s condition and its treatments, the more in control you may feel. For more information about neurofibromatosis, contact the following organizations:
Children’s Tumor Foundation, www.ctf.org