Tips for Parents of Children With Neurofibromatosis Type 1

Learning that your child has neurofibromatosis type 1 (NF1) comes with a range of emotions and practical concerns. While many people diagnosed with NF1 will have a normal life expectancy, the condition can come with a range of symptoms, including pain and learning disabilities.

Because NF1 looks different for every child, the path forward is impossible to predict — and that can take a mental toll.

“I often hear from parents that one of the most challenging things for them is the uncertainty of the future,” says David Miller, MD, PhD, co-director of the neurofibromatosis program at Boston Children’s Hospital and professor of pediatrics at Harvard Medical School in Boston.

Usually, children are diagnosed with NF1 because they have the café au lait spots (flat, light brown patches on the skin) that characterize this condition on their skin as a baby, says Dr. Miller.

“But certain complications related to neurofibromatosis type 1 may not show up until later. We can't really predict if or when some of the more difficult complications will occur,” he says.

But living with uncertainty doesn’t mean standing on the sidelines, feeling helpless. Educating yourself with reliable resources, understanding how NF1 shows up for your child specifically, and finding the support you need can help ensure the best possible outcomes for your child.

Keep reading to learn how to best navigate NF1, as well as practical tips on care and how to talk to your child about living with this challenging condition.

NF1 is a lifelong condition, and understanding the basics helps parents feel more prepared. In addition to spots on the skin, learning or attention challenges and benign tumors, called neurofibromas, are common. A subset of these, plexiform neurofibromas, can be larger or more complex, and often come with treatment decisions.

“If possible, seek out a neurofibromatosis clinic — even a one-time consultation can help you learn more about what your child’s NF1 is like,” says Roy Strowd, MD, professor of neurology at Wake Forest University School of Medicine and co-director of the neurofibromatosis clinic at Atrium Health Wake Forest Baptist in Winston-Salem, North Carolina.

These consultations can also be a source for overall strategies to improve health, prevent complications, and be plugged into a specialized team if complications do develop, says Dr. Strowd.

“This [learning more about NF1] can be incredibly empowering for patients and is tremendously rewarding as a physician,” he says.

The Children’s Tumor Foundation is a great resource for patients, says Miller. The website includes an overview of the condition, an FAQ page, and a photo gallery of people with neurofibromatosis.

Understand That NF1 Affects Each Child Differently

About half of all the cases of NF1 are in a family (inherited from a parent), and half of the cases are new cases — the result of a spontaneous or new change in the NF gene before they were born.

“But even within the same family, where they all have the same genetic variant causing NF, the symptoms can be quite different in the sense of which of the complications develop,” says Miller.

Although it’s normal to want to know how a condition will affect your child in the future, the unpredictability of NF1 makes that very challenging, says Nicole Ullrich, MD, PhD, co-director of the neurofibromatosis program at Boston Children’s Hospital and professor of neurology at Harvard Medical School in Boston.

“That’s because we can't predict what physical symptoms are going to appear based on their genetic abnormality,” she says.

Understanding that NF1 looks different in every child is important. While some kids may only need routine monitoring, others require treatment for vision changes, bone growth issues, or tumor complications.

The best thing parents can do to combat the unpredictability of NF1 is to be proactive in monitoring for symptoms and complications, says Dr. Ullrich.

At different ages, you monitor for different things, she explains.

Kids with NF1 may need:

• Annual eye exams to check for tumors that affect vision
• Blood pressure checks at every visit
• Growth and puberty assessments
• Screening for learning or behavioral concerns

“For children with plexiform neurofibromas, we talk about concerning symptoms,” says Ullrich.

Plexiform tumors are a type of slow-growing tumor that develops on the coverings of nerves and can sometimes reach very large sizes.

“We talk to parents about when to let us know in terms of symptoms that might develop as a result of those tumors, such as rapid growth or pain or change in their overall functioning,” she says.

Seek Out an Expert in NF1

When possible, seek out an expert in NF1, says Rebecca Brown, MD, PhD, associate professor, University of Alabama at Birmingham (UAB) department of neurology and director of the UAB Neurofibromatosis Clinic.

“Many patients ask why they need to see an NF expert instead of their ‘regular doctor,’ and the reason is that there is a lot to keep track of that a nonspecialist may not have the knowledge or the time to manage,” says Dr. Brown.

It may be worthwhile to travel to a distant NF doctor’s appointment annually if it provides the peace of mind that you are being entirely cared for, head to toe, she says.

Neurofibromatosis is a lifelong condition that often requires treatment — in some cases, invasive treatments such as surgery.

When and how to talk with your child about their diagnosis isn’t easy or straightforward. Many parents choose to include their child’s doctor or a genetics counselor to help guide the conversation and answer any questions that may come up.

Child-friendly resources, such as illustrated NF1 books, can make conversations easier. The Children’s Tumor Foundation offers free resources that helps parents decide what and how to share information with their child about their condition.

The foundation also created a YouTube video on how to tell a child about an NF1 diagnosis.

Remind yourself — and your child — that having NF1 is not caused by anything you did or didn’t do. At the same time, these emotions are normal — try not to add to your stress by feeling bad about yourself for having them.

Talk about your feelings with trusted family and friends, or find an in-person or online community to help you process your feelings. The Facebook community Faces of Neurofibromatosis is one place where parents can share the emotional challenges of parenting an NF1 child and help each other push back on blame and shame.

It’s okay to admit you need help. Support may come in the form of counseling, in-person support groups, or online communities.

Online Groups

Online groups include the NF Moms Rock!!!!! Facebook group and the Neurofibromatosis Network Support Group and Discussion community.

National and Regional Groups

The Neurofibromatosis Network is based outside Chicago in Wheaton, Illinois, but the organization has member organizations across the United States. If you live near an NF center, check in with your doctor about local groups.

The Children’s Tumor Foundation holds a NF Summit each year that brings together NF patients and families as well as researchers, doctors, patient advocates, and supporters.

Many of the previous year’s presentations can be found on YouTube and elsewhere online, and include topics such as “NF Moms Talk: What I Wish I Knew Then” and “How to Tell a Child About an NF1 Diagnosis.”

Social Workers, Genetic Counselors, and NF Clinic Staff

These experts in your community can also provide support and connect you with resources.

It’s easy to let NF1 dominate your family life. But kids with NF1 aren’t any different from healthy children — they need joy, play, and connection to thrive.

If your child has symptoms like anxiety, fatigue, and pain, it may take a little creative planning to avoid feelings of overwhelm or overstimulation. Seek out experiences that you can do at your own pace, such as an inclusive park or a nature walk.

NF camps can be a great place for kids to enjoy the magic of summer camp in a supportive environment. “Kids in smaller communities may have never met other kids with their condition — these camps can be a great experience for them,” says Ullrich.

• NF1 affects every child differently, so regular check-ins with doctors and specialists are key to catching issues early and tailoring care.
• Learning about the condition and finding reliable resources, such as NF clinics and the Children’s Tumor Foundation, can help parents feel more prepared and less isolated.
• Support for parents matters, too — counseling, peer groups, and community networks can ease stress and provide guidance.
• While NF1 can bring challenges, children with the condition also need the same joy, connection, and opportunities to thrive as any other child.