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There are many ways you can help children and their families get the care they need.
At Boston Children's Hospital, we know how overwhelming a diagnosis of neurofibromatosis can feel, both for your child and for your whole family. Please be assured that your child's doctors will have an ongoing relationship with your child and your family, and that we'll walk through this journey together.
Since a cure for NF has not yet been found, treatment focuses on managing symptoms. This means that we'll customize a treatment plan based on your child's needs, and update it whenever those needs change. Treatment options might include:
If your child has a neurofibroma that's causing her pain or other problems by putting pressure on a nerve or surrounding tissue, depending on its location, it can often be removed. Sometimes parents ask about removing neurofibromas for cosmetic purposes. This can also often be done, but because surgery can leave scars and carries intrinsic risks, and the tumors may grow back, lots of people with NF choose to accept their neurofibromas as part of their condition. This is one of the reasons why it's important that your child be treated by experienced NF specialists who understand when to intervene and when not to intervene.
Medication can also sometimes be useful in managing your child's symptoms; for example, if she's experiencing headaches or pain caused by tumors pressing on nerves.
Children with NF1 may have low muscle tone, which could affect coordination and balance. Physical therapy can help by strengthening your child's core muscles.
If your child has scoliosis or another bone deformity, a supportive device, such as a spinal brace, may help correct the curve.
Individualized Education Plan (IEP)
If your child has delayed development or issues with learning, attention or memory, she may be entitled to an Individualized Education Plan, as mandated by the Individuals with Disabilities Education Act (IDEA). During the creation of an IEP, a team that includes the child's parents, teacher and other specialists works together to create educational goals and a learning plan that takes advantage of the child's strengths and compensates for her weaknesses.
Whether your child has received a diagnosis of NF1 or has yet to meet the diagnosis, the doctors in our Neurofibromatosis Program will see her at least once per year, and arrange more frequent follow-up visits if necessary. Younger children are often seen once every six months. When your child comes to our clinic, we'll:
If you have any questions about interim follow-up visits, our clinical coordinator will be happy to talk with you.
It's normal and acceptable to go through a range of emotions when your child is waiting for or has received a diagnosis of NF1. Remember that there's lots of help out there – here at Boston Children's, online and out in the community. Some sources of support include:
Parent to parent: Want to talk with someone whose child has been diagnosed with NF1? We can often put you in touch with other families who have been through similar experiences and can share their experience.
Faith-based support: If you are in need of spiritual support, we will help connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.
Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.
On our For Patients and Families site, you can read all you need to know about:
Some other things you may want to consider:
Get involved– Consider joining Neurofibromatosis Inc.'s active online support community, finding a way to take part in Children's Tumor Foundation's annual NF Walk or joining a local support group (Neurofibromatosis, Inc. offers a good place to start. And your child can meet – and have fun with – other kids with NF at special summer camps, including Camp New Friends offered through Neurofibromatosis Inc or the Children's Tumor Foundation's NF Summer Camp.
Take care of other relationships- While you may feel like all your energy is focused on your child with NF1, be sure to take care of your other family relationships. Communicate with each other but remember that people deal with emotions differently. Allow each other some leeway in how you communicate. Make sure your child's siblings understand his condition, and reassure them with your attention.
Maintain a sense of normalcy- Although your regular routine may become centered around your child with NF1, try to keep your life as normal as possible. Continue doing activities that were important to you. Maintaining some sense of normalcy will help your family be in the best mindset to help your child.
Keep a journal- Keeping a journal of your child's health and medical care can be helpful for both you and your child's medical team, especially if you ever need to change specialists. You can also record your emotions and look back to reflect on how you have managed each phase of the situation.
Research and learn- Learn everything you can about your child's condition and the treatments available. Read inspirational stories about parents and children who have been through similar situations.
Learn more about the Neurofibromatosis Program at Boston Children's Hospital.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”