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NF for Family & Carers

Growing resilient children

Neurofibromatosis is a big word when you are a little person. As a parent or carer, you are invaluable in your child’s journey to resiliency. The love, care and support you provide along the way will allow them to face whatever challenges may occur.

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.

Complications seen

in NF1

While every child is different the below shows the common symptoms of NF1 in childhood and when they’re generally expected to arise.

Symptom	Usually seen before
Café-au-lait spots	Birth onwards
Plexiform neurofibromas	Birth – 2yrs
Bone dysplasia	5yrs
Scoliosis	Severe 5yrs; Mild 15-17yrs
Freckling in armpit, groin or neck-folds	6yrs
Optic pathway glioma (OPG)	8yrs
Lisch nodules	20yrs

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).

Download as a factsheet

in NF2-SWN

One of the early markers for NF2-SWN are juvenile cataracts, which are seen in the first few years after birth in most children with NF2-SWN.

Other early signs of NF2-SWN 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.

Monitoring

NF1

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

NF2-SWN

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-SWN. 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.

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-SWN differ. Children with NF1 are known to experience learning and behavioural difficulties, whereas students impacted by NF2-SWN may need mobility and communication assistance, depending upon their specific symptom profile, however normally do not have learning or social difficulties.

Talking about NF with your child

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.

Download the NF hero book