Children

Raising a child with CF can bring many questions, challenges and milestones along the way. As your child grows, CF may impact different aspects of daily life, from treatments and nutrition to school, wellbeing and family routines. At CFWA, we are here to support you and your family with and a range of services to help along the journey.

Family Services

We have a range of services available to support the family of a child with CF:

• In home support including short term cleaning, respite and other practical supports
• Assistance with physio and developing routines
• Parenting and family support
• Psychosocial support for parents and siblings
• Hospital support
• Peer connection with other parents
• Financial support
• School program
• Books, resources & information

Please get in touch with our Services team via email services@cfwa.org.au or on 08 6224 4100 if you would like to know more about accessing any of our services. Alternatively, you can request support by clicking the link below and our team will be in touch. 

Clinic & Hospital

Clinic

Managing CF requires regular appointments with the specialised CF team at Perth Children’s Hospital (PCH). Routine reviews are conducted three monthly and are crucial for timely detection and prevention of complications. You will also attend an annual review each year, however, if your child is unwell, you may need to be seen more often.

The PCH CF team have put together this Monitoring Children with CF factsheet which details the routine and annual reviews that families can expect.

You can contact the CF clinical team with any questions or health changes.

• Monday – Friday, 8am to 4pm
• Phone: 6456 0217
• Email: PCH.CF@health.wa.gov.au

Further contact details can be found here.

Hospital

Most children with CF will require a hospital admission at some stage. Although it may seem overwhelming, hospital admissions are essential to your child’s health and can deliver significant benefits.

If you are preparing for an admission, you might like to read the following resources which includes information on what to expect as well as tips for helping babies and children through procedures.

CFWA Support

CFWA can provide support including:

• Travel and parking subsidy for people in financial need to help cover the costs of clinic appointment or hospital admission travel and parking costs.
• CFWA Hospital Snack Packs are available on the wards. Please ask a nurse to receive yours.
• A Hospital Activity Bag filled with lots of age-appropriate activities and items can be delivered by a member of the CFWA services team once ordered.
• General support- please get in touch with any concerns or requests for further support.

Airway Clearance & Exercise

Airway clearance is a key part of managing CF. It helps loosen and move thick, sticky mucus out of your child’s lungs to reduce the risk of lung infections. It is usually required twice a day, even when your child seems well, because it helps prevent mucus from building up over time.

During coughs, colds or infections, airway clearance may need to happen more often. Exercise is also a key part of CF treatment, with benefits to lung function, strength and fitness levels. You will be directed and supported with physio by the PCH physiotherapist.

Routines

Building airway clearance into everyday routines, such as before school and before bed, can help make treatments more manageable and establish healthy habits that support your child’s long-term health. We can also support you with building routines.

CF Physio 4 Kids also have great resources for parents and carers.

Community Support Worker Program

In WA we have a Community Support Worker (CSW) program which enables you to receive regular home visits to support you and your child with airway clearance and/or exercise routines. Our CSWs receive intensive training by CFWA’s Services Team to provide them with the skills and knowledge they need to supervise treatments safely and effectively.

Practical home support including help around the house, as well as short term respite, is also available for families experiencing an acute change in circumstances. This may be the birth of a new baby or injury/illness. This service is available for anyone with CF and can be accessed by referral from your CF team or self-referral.

Sputum Samples

Children with CF should provide a sputum sample 4 times a year. These samples help detect and identify bacteria, viruses and fungi that may be found in your child’s lungs and allows for best treatment. Children on modulator drugs still grow bugs even without having lots of sputum, if any.

Our Year of the Frog collaborative project with PCH hopes to boost the number of families submitting regular sputum samples each year. Kids are rewarded for submitting sputum samples by receiving a prize from us. Click here to read more helpful resources and watch our short videos featuring other kids and teens with CF to help your child learn how to produce a sputum sample at home.

Nutrition

Normal growth and development are the main nutritional goals for your child. Better nutritional status in childhood is associated with improved lung function, immunity to help fight infections, mood and wellbeing, weight stability, adult height and fewer complications associated with CF.

The team at PCH will monitor your child’s weight and growth at clinic visits and the dietitian will provide tools and strategies aimed at keeping your child at an optimal nutritional status. Each child with CF will have individual dietary needs based on various factors such as symptoms, medications, gender, age, weight, height and physical activity levels.

We cover this topic in detail on our Nutrition for Children page.

Medications

Having CF means your child will be on lots of different medications. Common medications include enzymes, CFTR modulators, bronchodilators, mucolytics, antibiotics, anti-inflammatories, salt and vitamins. These medications may be given orally, intravenously, inhaled through a nebuliser or other inhalation device.

Pill Swallowing

Learning to swallow tablets can be difficult for children. We have developed some resources to help families teach their child to swallow tablets. If you need support, we can also offer one-on-one assistance. Please reach out.

Modulators

Starting a modulator medication can be an exciting milestone for your child and family, however adjusting to a new treatment can take time. New medications may bring changes to daily routines, possible side effects, and a range of emotions as you and your child adapt to improvements in health and wellbeing. Finding a routine that works for your family is important, particularly as treatment schedules, nutrition needs and day-to-day life may change. Read more about this here.

For more detailed information about CF medications, check out our factsheets on:

Emotional Wellbeing

Parent Support

A diagnosis of CF in your child can place a significant emotional and physical burden on parents and can lead to feelings of anxiety and/or depression. It’s important to acknowledge these feelings and reach out to your GP if mental health challenges persist. Our services team can also provide support and referrals to further support as needed.

Carers of a child with CF who are accessing counselling or psychology mental health support, can access our Mental Health Out of Pocket Subsidy to assist with any excess fees not covered by Medicare or private health insurance.

We also offer a range of peer connection programs that give parents and carers the opportunity to take a break, connect with others who understand the challenges of life with CF, and build supportive relationships within the community.

Child Support

If your child is struggling with any aspect of their mental wellbeing, you can get a referral to the social worker or psychologist at PCH. You can also contact our Services Team to access support for your child with CF and their siblings, including:

• Support around anxiety or emotional regulation
• Talking through worries or big feelings
• Using resources such as journals, creative activities, or sensory tools to help with expression and coping strategies
• Referral to further mental health support and/or OT

Your child may also benefit from reading our book, My ABCF which is designed to encourage conversations with your child about CF and initiate a greater understanding of how their body works and the importance of treatments.

CF Kids Connect

If your child would benefit from connecting with other kids their age with CF, our CF Kids Connect program is a safe, online space for children with CF to connect, build friendships and participate in fun group activities from home. Sessions are facilitated by our services team and are available for children in two age groups; 5-8 and 9-12 years. We also have session which include siblings.

We also have sessions for polder children aged 12+in our CF YOUth Connect program.

Sibling Support

Having a sibling with CF can bring a mix of emotions. At times, siblings may feel left out, worry about their brother or sister, miss out on attention, or experience feelings of frustration, sadness, or jealousy. These feelings are common and completely understandable.

We offer a range of supports for young carers, including one-on-one support, opportunities to talk through their feelings, social connection activities, and dedicated young carer events where they can have fun, build friendships, and connect with others who understand their experiences.

More information here.

Behavioural Support

Living with CF can sometimes bring behavioural challenges for children and families. CFWA’s psychosocial team can provide practical support around routines, treatment cooperation, emotional regulation, and parenting advice. We can help families develop strategies, build confidence and connect with specialist services when additional support is needed.

Neurodivergence & CF

There is growing evidence that attention deficit hyperactive disorder (ADHD) rates are higher in children with CF than in the general population and anecdotal evidence suggests autism spectrum disorder (ASD) rates are also higher in children with CF. If you think your child may be neurodiverse and are seeking support, have a read of our factsheet for further information.

We also run a neurodivergence & CF parent support group. Click here for more information.

School & Daycare

Going to day care or school can take some extra planning when your child has CF. We can support families and schools with education, resources and practical strategies to help children with CF feel safe, included and supported throughout their school journey.

CFWA Support

• Individual CF Student Action Plan
• School Management Plan
• Education for teachers, school staff and peers
• Online eLearning for educators
• Resources and books for educators and parents
• Advocacy

Read more about these services here.

Employment & Finances

Employment

Many parents of children with CF make career decisions based on their child’s health needs. This may mean reducing work hours, changing jobs or putting career goals on hold to manage appointments, hospital admissions and daily treatments. Finding a job that fits in with your child’s needs can be tricky.  We have more information to help you explore your options here.

Finances

Managing finances while raising a child with CF can also be challenging. The costs associated with healthcare, travel, time away from work and everyday family expenses can quickly add up. We have a range of information and resources covering budgeting, insurance, financial planning and available support options. We also have some subsidies available for people in our community who are in financial hardship.

Our team can also connect you with trusted services and practical tools to support your financial wellbeing. Whether you need help understanding rebates and subsidies, accessing financial counselling, or finding ways to manage household finances, we can help point you in the right direction.

Lifestyle

Travel

Travel takes planning, however travelling with a child with CF can involve extra organisation to ensure the trip goes smoothly, including managing medications, travel insurance, avoiding infection/illness and more.

Summer

During the summer months, there are some important considerations to take into account for your child’s health including dehydration, sun sensitivity, allergies, effects of heat on medications, water play considerations and bush fire risks to lung health.

Toilet Training

You may have questions about toilet training your child with CF and whether factors such as medications, gut issues or increased fluid intake could affect the process. While every child develops at their own pace, understanding how CF may influence toilet training can help you feel more prepared and confident as your child learns this important skill.

Infection Prevention

People with CF are more vulnerable to lung infections because the thick, sticky mucus in the lungs can trap germs and make it easier for infections to develop. While avoiding germs completely isn’t possible, there are simple steps you can take to reduce the risk to your child. These include practising good hand hygiene, avoiding close contact with people who are unwell, keeping a safe distance from other people with CF, and adhering to the National Immunisation Program.

Cross Infection

Cross infection refers to germs that can spread between people with CF. Some bacteria can be particularly harmful to others with CF, which is why people with CF should avoid close contact with each other. This is well managed in clinic and hospital settings.

Your CF team will guide you and focus on practical, realistic ways to keep your child healthy while still enjoying family life, play, school and social connection.

Check out our factsheets for practical tips and detailed information on infection prevention and reducing your child’s risk of illness.

Comorbidities

Some children with CF will experience co-morbidities associated with having CF. These may include Cystic Fibrosis Related Diabetes (CFRD), incontinence, bone weakness and more.

Procedures

There may be times where your child will need to undergo certain procedures.

We have the following factsheets available on some common procedures: