Treatments for Neurofibromatosis Type 2 in Children

Receiving a diagnosis of neurofibromatosis type 2 (NF2) can be overwhelming, both for young adults and their families. That's why surveillance and monitoring remain a key part of treatment in the Neurofibromatosis Program here at Boston Children's Hospital. We follow individuals closely with hearing and vision evaluations so we can detect changes in symptoms right away.  This early intervention enables us to deliver the most effective and efficient treatments possible.

How is NF2 treated?

Since a cure for NF2 has not yet been found, treatment focuses on managing symptoms and complications.  Experts here at Children's will customize a comprehensive treatment plan based on each patient's unique needs.

A person with NF2 might need one or more of the following treatment methods in order to manage symptoms:

  • Surgery: Surgery may be used to remove schwannomas that are pushing on the spinal cord or meningiomas (a non-cancerous tumor) that are causing seizures. At Boston Children's, we believe in taking a more conservative approach to treating tumors. We only use surgery in situations where the tumor is producing symptoms and causing problems.
  • Medication: Medication can also sometimes be useful in managing your child's symptoms; for example, if she's experiencing ringing in the ears (tinnitus), headaches or pain caused by tumors pressing on her nerves.
  • Physical therapy: Children with NF2 may have a tumor pushing on the cerebellum (the part of brain that controls balance). These tumors usually need to be surgically removed in order for the problem to be eliminated. However, physical therapy (PT) can compensate for problems with balance and weakness by helping to strengthen the core muscles. PT can also help children with NF2 learn how to be more careful when their walking so they won't fall.
  • Supportive devices: Hearing aids or an FM system may be recommended for use if there is documented decrease in hearing.

How is hearing loss treated?

In most cases, the vestibular schwannomas that grow on the auditory nerve will need to be removed surgically.

Individuals who experience hearing loss or impairment have the following non-surgical treatment options:

What does long-term follow-up care involve?

After an adolescent or young adult has been diagnosed with NF2, the doctors in our Neurofibromatosis Program will see her at least once per year and arrange more frequent follow-up visits if necessary.

What makes Boston Children's approach unique?

In our NF program, the first step in the treatment process is a comprehensive evaluation that includes a physical exam as well as an extensive review of the patient's medical, developmental and family histories. This evaluation will confirm or establish the correct diagnosis of NF2.

Genetic counselors are also available to explain the possible genetic and hereditary implication of NF2 for affected individuals and their family members.

The most unique feature of our program is that it brings together physicians from various departments throughout Boston Children's who have many years of experience diagnosing and treating NF. This multidisciplinary approach allows us to provide you with direct connections to experts specializing in:

What can I do at home to help my child?

The most important things a parent can do for a child who has NF2 is make sure that he is comfortable and safe in his environment, and encourage him to participate in physical therapy and mobility training. Sympathy and emotional support are also invaluable parts of the treatment process.

Coping and support

It's normal and acceptable to go through a range of emotions when your child is waiting for or has received a diagnosis of NF2. Remember that there's lots of support out there, and Boston Children's is here to help.

In our Neurofibromatosis Program, we offer support to adolescents and their families, both online and out in the community.

Our program works to meet the medical and emotional needs of the child as well as the family's needs for support and education. We accomplish this by providing psychosocial counseling and educational materials that address issues related to NF.

Some sources of online support include:

  • Children's Tumor Foundation: The Children's Tumor Foundation is a non-profit medical foundation that advocates for research and the development of improved treatment options for NF and related disorders. They also support individuals affected with NF through education and better access to higher-quality health care.
  • Neurofibromatosis Network: Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and the development of local NF organizations
  • The NF2 Crew: The NF2 Crew provides online support for individuals with NF2 as well as their friends and families.  Members of the organization occasionally meet up in person to discuss topics and share stories related to the disorder.