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What Is the Treatment for Neurofibromatosis in Children?

By H. Lo
Updated May 17, 2024
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Neurofibromatosis is a progressive, genetic disease characterized by the growth of tumors on the nerves. In general, treatment for neurofibromatosis in children depends on the type of the disease in question. This is because there are three different types of neurofibromatosis, each one with varying symptoms and complications that might require treatment. These different types include schwannomatosis, neurofibromatosis type 1 (NF1), the most common type, and neurofibromatosis type 2 (NF2). In severe cases, treatment for neurofibromatosis in children also includes chemotherapy, radiation and surgery.

Symptoms associated with neurofibromatosis type 1 are mild to moderate and include brown spots on the skin, lisch nodules and skeletal abnormalities. Although these symptoms might not be severe, this type of neurofibromatosis can eventually lead to complications. For example, disfigurement might occur. Or a child might experience learning disabilities such as delayed growth in walking or problems with speech.

Rarer than type 1, neurofibromatosis type 2 causes symptoms such as deafness, partial hearing loss and problems with balance. These symptoms arise from the tumors that grow on the vestibular nerve, a part of the auditory nerve. Tumors that grow on the auditory nerve can complicate a child’s condition, as they can increase the risk of acquiring problems with vision as well.

The third type of neurofibromatosis discovered is known as schwannomatosis. This type is characterized by tumors that might grow on different nerves throughout the body except for one nerve. With schwannomatosis, tumors do not grow on the vestibular nerve.

Complications of neurofibromatosis type 1 that might require treatment in children include seizures and speech impairment. This might include such treatment options as medications and therapy. With neurofibromatosis type 2, a child might need to undergo surgery to remove tumors on the auditory nerve, a procedure which might cause deafness. While hearing aids might not work as a treatment option after surgery, there is the possibility of receiving an auditory brainstem implant, which can restore some hearing capability.

Although most of the tumors associated with all types of neurofibromatosis are benign, they can sometimes become malignant. If they do, treatment of neurofibromatosis in children includes cancer treatments such as chemotherapy, radiation and surgery. Chemotherapy and radiation destroy cancer cells and, in turn, destroy the tumors. Surgery is used to remove tumors but is also used to treat other complications associated with neurofibromatosis as well, such as scoliosis.

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