As a parent we all have hopes, dreams and expectations for our children. Sometimes when a child is diagnosed with NF, it can leave parents feeling a sense of grief and loss for what could have been. A diagnosis of NF doesn’t mean your child will not live a long and full life. However, a diagnosis does have lifelong implications that you and your child will need to navigate.
The prospect of this “new” journey with our children can be daunting. Rest assured, the CTF is here to help provide you with support, information, resources, as well as service and community connections along the way.
BUILDING RESILIENT CHILDREN
Neurofibromatosis is a big word when you are a little person. What it represents to a parent can feel very scary. Understanding what NF is, and finding ways to cope with the vast array of emotions that come with this diagnosis, is very hard, but it is also very important.
You are invaluable in your child’s journey to resiliency. It is the love, care and support you provide along the way that will allow them to face whatever experience they will have, along the NF journey.
To assist our children in coping with their diagnosis and what it means for them, we as parents first need to understand that ourselves. This section of our site specifically looks at the signs and symptoms that generally appear in childhood (up to puberty) as well as the challenges or issues that may arise along the way and some practical strategies to help tackle these issues if they arise for your child.
You can read more about the impacts NF has on teens and adults in those sections.
A true story of how knowing about your condition can help break down barriers and empower your child.
This is Sophie*. She is 5 years old, and when she started at a new school one of the first things she did was ask her teacher to read the NF Hero Book.
Sophie stood in front of her class to show her peers her “NF spots”. She used the knowledge she had been given to show others what makes her a NF Hero.
In a single, uncomplicated moment Sophie was able to do what many fail to achieve, even as adults - she showed others what made her special. She understood that talking about her NF was the first step in building understanding and acceptance amongst her peers and that our differences do not have to divide us.
* name changed
BUY THE NF HERO BOOK DOWNLOAD THE BOOK
HOW WILL NF AFFECT MY CHILD?
NF can affect children in many ways but knowing what to focus your attention on can help provide a sense of control and reduce any anxiety you feel.
The way in which your child will be affected also depends on the type of NF they have.
Below, we break NF down into its three types:
NEUROFIBROMATOSIS TYPE 1
NF1 is a progressive condition which your child is born with. It will typically present early on in childhood and some of the features may occur from birth, though may not be evident for some time. If these symptoms do not present at an early age, it is unlikely they will occur later. This applies to features such as: bone dysplasia, disfiguring plexiform neurofibromas and developmental delays.
- Skin examination: the doctor will look at the number, size and shape of café-au-lait spots,whether there is freckling and neurofibromas.
- Neurological examination: you may be asked questions about your child’s movement and the doctor may use instruments to test your child’s reflexes or may be asked to complete tasks like walking on tiptoes.
- Lots of questions: the doctor will ask about school, learning, behaviour, social skills, any new symptoms or changes.
- Growth measurement: the doctor will check your child’s height, weight and head circumference.
- Blood pressure
- Ophthalmologist who will conduct an eye exam every 6 to 12 months depending on your child’s age and what your paediatrician has recommended
Health Complications in Children with NF1
While every child is different the below shows the common symptoms of NF1 in childhood and when they’re generally expected to arise. You can read more about each of these and more NF1 symptoms here.
Usually seen before
Birth – 2yrs
- Severe 5yrs
- Mild 15-17yrs
Freckling in armpit, groin or neck-folds
Optic pathway glioma (OPG)
Other features of NF1 are seen in childhood, including learning problems and headaches, but many others do not usually appear until adolescence or adulthood (though there are exceptions).
Testing for NF1
A blood test for NF1 is not required if your doctor is confident that your child meets the criteria for a diagnosis, and so you may not be offered this. In many instances you may be able to fund testing yourself, however, the results from this testing are not 100% accurate and adds little value due to the limited information available about the implications of specific gene changes. See our section Causes of NF for more information.
Learning and Behavioural Difficulties
At least half of all children with NF1 will also have some form of learning and behavioural difficulty. However, most have a normal intelligence level. Early intervention for such difficulties is recommended and has been proven to assist greatly. Depending on the issue, your child may be entitled to NDIS to cover some of the expenses incurred.
Download Addressing Attention Difficulties in NF1 Resource for teachers. For more information about ways to help children and school and home, click here.
NEUROFIBROMATOSIS TYPE 2
NF2 is a progressive condition which usually first appears in adolescence or early adulthood. However,we have entered an era where technology allows us to detect changes and test for the condition in early childhood. In some instances, children develop complications earlier than is usual with NF2 and so we do occasionally see children under 10 year, diagnosed with NF2 .
Signs of NF2
One of the early markers for NF2 are juvenile cataracts, which are seen in the first few years after birth in most children with NF2. A well-versed ophthalmologist may recognise the link between the two and refer you on to genetics or paediatric care as appropriate for review.
Vestibular schwannomas are not often seen bilaterally until later in childhood/ adolescence, and so hearing is often still intact, however, where a child is known to have this condition, audiological screening will commence to ensure that any changes in hearing are picked up as early as possible.
Other early signs of NF2 include foot or wrist drop or neurological function issues. Some children will also begin regular monitoring because there is an isolated NF2 tumour, which leads to the diagnosis. If this is the path your child’s journey has followed, the symptoms your child experience are most often in relation to an underlying tumour. You can learn more about these here.
Your child’s standard monitoring in Australia should include:
- Skin examination: the doctor will look at the number, size and shape of café-au-lait spots, whether there is freckling and neurofibromas.
- Neurological examination: the doctor will look for any functional impact on reflexes and mobility
- Ophthalmologist for an eye exam
- Audiologist for a hearing and speech recognition tests
MRI scans play an important part in monitoring for children with NF2. Guidelines recommend that annual brain and bi-annual spine MRIs commence from age 10 in children who do not otherwise present with symptoms at diagnosis.
Your child may already be receiving regular MRIs due to signs and symptoms already present by the time they reach this age.
Head to NF2 for more information about this condition and the treatments available.
NF AND SCHOOL
School can be a challenge for a lot of children with NF for several reasons. While it is at your discretion as to whether you chose to disclose your child’s diagnosis to their school teachers, we have found that it is mostly beneficial to do so. That way they can enact the appropriate level of support to ensure a successful school year for your child.
The challenges faced by students with NF1 and NF2 differ. Children with NF1 are known to experience learning and behavioural difficulties, whereas students impacted by NF2 may need mobility and communication assistance, depending upon their specific symptom profile, however normally do not have learning or social difficulties.
NF1 at School & Learning Difficulties
It is widely accepted that 50-80% of children with NF1 will experience some level of learning and/or behavioural challenges, with 21% on the Autism Scale.
Up to 8 of every 10 children will experience learning and behavioural difficulties.
These can range from very minor, and almost unnoticeable to severe. However, intellectual disability is very rare.
Where concerns are raised about a child’s learning and/or behaviour, a referral to see a neuropsychologist or education psychologist may be warranted. Sometimes your school can arrange this for you, or if you are located near a NF Clinic, you may be able to be seen by the NF1 Learning Clinic team, however, wait-lists will apply. See Contact Us for NF Clinic contact details.
Depending on the specific learning profile of your child, you may be able to access support, including a teacher’s aide, equipment for the classroom, and /or extra time for exams as they get older, through the education system. Your school may also have access to speech pathology and or occupational therapy which can be very helpful.
For some children, visual loss or the location of a tumour may mean their mobility is impeded. In these instances, the National Disability Insurance Scheme (NDIS) may be able to assist with equipment and other support. However, NDIS does not cover supports that they deem to be in the education department’s realm.
NF2 at School
The challenges faced by children with NF2 in school tend to be quite different from those faced by a child with NF1. This is because there is no evidence to suggest that children with NF2 have learning difficulties caused by their condition.
For children who are diagnosed due to the presence of symptoms, some aid may be required in the classroom or on the playground for any specific mobility or communication issues they may have. For those who are diagnosed on the basis of family history and a positive gene test, it may be some time before any real assistance is required.
In these instances, NDIS may fund supports for children, as these needs will extend beyond the classroom.
Depending on your child’s level of ability, speaking with your school about an Individual Education Plan (IEP) or supports that they can provide is a good first step.
Contact our Support Services Team if you would like assistance advocating for your child with their school or to discuss NDIS and other community service-based supports you may be entitled to access. Complete our contact form or call 02 9713 6111.
HAVING ANOTHER BABY
If you or your partner have NF, then each child you conceive will have a 50% chance of having NF if you chose NOT to involve any fertility assistance. For details about your options when planning a child, please read our Family Planning section in the adult life cycle section.
If there is no indication of NF in either yourself or your partner, then the risk of a future child having NF is about the same as for the rest of the population. However, there is a possibility, albeit small, that one of you do have NF but have not been diagnosed or you have a segmental or mosaic form of the condition. Your doctor may quote that this is less than 1%.
Remember that the symptoms your first child experiences does not set a pattern of symptom severity for future children.
TALKING ABOUT NF WITH YOUR CHILD
Sometimes it can be hard to know what to say to children and their siblings about NF. Whatever you decide, it is important to feel comfortable with the approach you use and the information you give. Every family will be different in the way they approach this.
Language and how you explain NF to your child can be a challenge, particularly if they are quite young. Just because it is a serious condition, does not mean everything about it needs to be serious. Many families have come up with their own names for things like café-au-lait spots to give them some control and start the process of learning to love what makes them different. Some terms used include“coffee spots”, “special marks” or "butterfly kisses". Some have affectionately referred to their child as a "choc chip muffin", bought a Dalmatian to match or even used an Atlas to assign their spot shape a country!
Rest assured we have some tips for you. Check out our Talking with Children information sheet. You may also find the children’s book The NF Hero by Lana Hanssens (who is a mum of a NF Hero herself) helpful in explaining NF to younger children.
TALKING WITH CHILDREN BUY THE NF HERO BOOK DOWNLOAD THE BOOK
We have put together a list of resources that are aimed at helping children understand NF and manage some of its impacts. Many of these books have been selected and recommended by the CTF USA”Classrooms That Care” Advisory Panel and are used with kind permission for Australian audiences.
Each Kindness by Jacqueline Woodson
This unforgettable book is written and illustrated by the award-winning team that created The Other Side and the Caldecott Honor winner Coming On HomeSoon. With its powerful anti-bullying message and striking art, it will resonate with readers long after they've put it down.
Chloe and her friends won't play with the new girl, Maya. Every time Maya tries to join Chloe and her friends, they reject her. Eventually Maya stops coming to school. When Chloe's teacher gives a lesson about how even small acts of kindness can change the world, Chloe is stung by the lost opportunity for friendship, and thinks about how much better it could have been if she'd shown a little kindness toward Maya.
Being You is Enough by Josh Langley
Being You is Enough is a groundbreaking book to help kids with confidence and self esteem. Entertaining and refreshing, it will inspire kids to be themselves and stand up tall. The bright and fun book uses simple messages and quirky illustrations to encourage kids to celebrate themselves for who they are. Kids will love the easy, upbeat style delivering deeper messages about self-acceptance, creativity, positive thinking and friendship that every child needs to feel strong, happy and confident. Gently humorous but with a lovely message of self-acceptance, Being You is Enough: And Other Important Stuff is suitable for primary aged children.
It's OK to Feel the Way You Do by Josh Langley
In this bright and heartening book, Josh Langley helps kids get to know and make friends with their feelings. Bursting with simple and effective ways that kids can notice and handle difficult emotions like anger, anxiety, and loss and also rejoice in the positive feelings such as joy, empathy and happiness, this is a little book with a big message. It’s OK to Feel the Way You Do empowers kids to understand and share their feelings so they can enjoy life more.
Magnificent Mistakes and Fantastic Failures by Josh Langley
Award-winning author, Josh Langley, is back with a ground-breaking book on resilience for kids. Back with his trademark quirky style that’s adored by both kids and parents, Langley tackles the serious subject of building resilience in today’s children by showing that mistakes and failures can be opportunities for learning and growth. Good friends, positive self-talk, curiosity and wonder also become a perfect mix to give children a confident perspective on life and the foundations to step bravely into the world and try new things. With mental health dominating headlines and front of mind of all parents, Langley’s book, Magnificent Mistakes and Fantastic Failures, offers hope and strategies for kids to find their own inner resilience and to thrive in a rapidly changing world.
Wonder by R. J. Palacio
Wonder begins from Auggie’s point of view, but soon switches to include his classmates, his sister, her boyfriend and others. These perspectives converge in a portrait of one community’s struggle with empathy, compassion and acceptance.
August Pullman was born with a facial difference that, up until now, has prevented him from going to a mainstream school. Starting 5th grade at Beecher Prep, he wants nothing more than to be treated as an ordinary kid, but his new classmates can’t get past Auggie’s extraordinary face.
We're All Wonders by R. J. Palacio
Countless fans have asked R. J. Palacio to write a book for younger readers. With We’re All Wonders, she makes her picture-book debut as both author and artist, with a spare, powerful text and striking, richly imagined illustrations. Palacio shows readers what it’s like to live in Auggie’s world — a world in which he feels like any other kid, but he’s not always seen that way.
We’re All Wonders may be Auggie’s story, but it taps into every child’s longing to belong, and to be seen for who they truly are. It’s the perfect way for families and educators to talk about empathy and kindness with young children.
Be Good to Eddie Lee by Virginia Fleming
Fleming's story accurately captures the attitudes and behaviour children often adopt when it comes to tolerating peers who are different. Her characters ring true without being stereotypes and her message about acceptance and friendship is poignant, not heavy-handed. Sensitive portraits of all three children provide a depth of emotion that supplements the spare, perceptive text. Eddie Lee's facial features clearly identify his mental and physical challenges, but his portrayal remains positive, realistic and non-threatening. This successful collaboration is a rarity for its potential to entertain, educate and encourage deeper consideration for others. Ages 4-8. (Oct.)
Christy's mother always tells her to be good to Eddie Lee, a neighbourhood child with Down's Syndrome. But Christy wants to run and play — and not worry about Eddie Lee tagging along. One hot summer day, though, Eddie Lee takes Christy to a secret place in the woods and teaches her that beautiful things can be found in unexpected places.
Out of My Mind by Sharon M. Draper
In this breakthrough story, readers will come to know a brilliant mind and a brave spirit who will change forever how they look at anyone with a disability.(Oct.)
Eleven-year-old Melody is not like most people. She can’t walk. She can’t talk. She can’t write. All because she has cerebral palsy. But she also has a photographic memory, she can remember every detail of everything she has ever experienced. She’s the smartest kid in her whole school, but NO ONE knows it. Most people — her teachers, her doctors, her classmates — dismiss her as mentally challenged because she can’t tell them otherwise. But Melody refuses to be defined by her disability. And she’s determined to let everyone know it…somehow.
A Monster Like Me by Wendy S. Swore
Being the new kid at school is hard. Being called a monster is even harder. Inspired by real events in the author's life, A Monster Like Me teaches the importance of believing in oneself, accepting change, and the power of friendship.
Sophie is a monster expert. Thanks to her Big Book of Monsters and her vivid imagination, Sophie can identify the monsters in her school and neighbourhood. Clearly, the bullies are trolls and goblins. Her nice neighbour must be a good witch, and Sophie's new best friend is obviously a fairy. But what about Sophie? She’s convinced she is definitely a monster because of the monster mark on her face. At least that's what she calls it. The doctors call it a blood tumour. Sophie tries to hide it but it covers almost half her face. And if she’s a monster on the outside, then she must be a monster on the inside, too.
The Black Book of Colours by Menena Cottin
Living with the use of one's eyes can make imagining blindness difficult, but this innovative title invites readers to imagine living without sight through remarkable illustrations done with raised lines and descriptions of colours based on imagery. Braille letters accompany the illustrations and a full Braille alphabet offers sighted readers help reading along with their fingers. This extraordinary title gives young readers the ability to experience the world in a new way.
The Invisible Boy by Trudy Ludwig
From esteemed author and speaker Trudy Ludwig and acclaimed illustrator Patrice Barton, this gentle story shows how small acts of kindness can help children feel included and allow them to flourish. Meet Brian, the invisible boy. Nobody ever seems to notice him or think to include him in their group, game, or birthday party...until, that is, a new kid comes to class. When Justin, the new boy, arrives, Brian is the first to make him feel welcome. And when Brian and Justin team up to work on a class project together, Brian finds a way to shine.
I Am Enough by Grace Byers
This is a gorgeous, lyrical ode to loving who you are, respecting others, and being kind to one another— from Empire actor and activist Grace Byers and talented newcomer artist Keturah A. Bobo.
We are all here for a purpose. We are more than enough. We just need to believe it.
Stay Strong: Mindful Kids – An Activity Book for Young People Who are Experiencing Bullying by Katie Abey and Dr Sharie Coombes
The encouraging and simple activities and exercises tackle the feelings of being bullied, teased and overwhelmed; children will enjoy using their creativity to combat negative feelings and work out how to cope with these emotions through writing, colouring, doodling and drawing.
The Worry Tree by Marianne Musgrove
Juliet’s a worrywart, and no wonder! Her little sister, Oaf, sings ‘The Irritating Song’ all day, her parents are arguing, and Juliet’s two best friends are jealous of each other. Juliet can’t fit in any more worries! But behind the wallpaper in her new room, Juliet discovers a painting of a tree. It’s the Worry Tree, and with the help of a duck called Delia and the other Worry Tree animals, Juliet might be able to solve some of life’s big problems.
The NF Hero by Lana Hanssens
The CTF is very proud of the publication of this wonderful book by community member LanaHanssens. The NF Hero was an idea Lana brought to us, which we were then able to turn it into reality.This beautifully written and illustrated 20-page book tells the story of Alex who has NF, as well as several superpowers!
Be A Friend by Selina Yoon
In this book difference is celebrated instead of shunned. Dennis is a boy who communicates through mime. He is lonely until he meets Joy, a girl who shares his view of the world. A subtle look into the world of children with communication differences.
You, Me and Empathy by Jayneen Sanders
Teaches children about empathy, feelings, kindness, compassion and tolerance.