Children

Bringing up a child with CF can raise many questions because CF affects many aspects of your and your child’s life. CFWA is here to support you and your family with a range of services as outlined below.

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 our services and support.

Airway Clearance

Airway clearance, or chest physiotherapy, is needed to remove thick, sticky mucus from the lungs to prevent lung damage. It is usually started as soon as your child is diagnosed with CF and continues twice a day on an ongoing basis. Toddlers and young children can be particularly challenging when it comes to airway clearance, which is why it is so important to create a good routine from a young age. CFWA also have various support programs to assist with airway clearance routines at home.

Community Support Worker Program

In WA we have a Community Support Worker (CSW) service to enable ongoing support in the home with airway clearance and exercise routines. Our CSWs receive intensive training by CFWA’s health professionals to provide them with the skills and knowledge they need to supervise treatments safely and effectively.

Sputum Samples

Children should get a sputum sample to Pathwest 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 Project collaborative project with PCH hopes to boost the number of families submitting regular sputum samples each year.

How to Catch Your Frogs is designed to help your child learn how to produce a sputum sample at home.

We Want Your Sputum is for older kids aged 12+ and encourages them to produce regular sputum samples.

To read more about airway clearance for children, have a read of the following factsheets:

Useful External Resources

• CF Physio 4 Kids
• Sputum Sample Collection (PCH)
• Tips & Tricks for Sputum Sample Collection (PCH)

Exercise

Exercise is a key part of CF treatment, with benefits to lung function, strength and fitness levels.

Exercise Support

We can support your child to live an active lifestyle with the following programs:

• Our Family Support Subsidy can be accessed annually to help with the costs associated with sporting fees or physio/exercise equipment.
• Community Support Workers can assist with goal setting, motivation and assistance with exercise, with a program specifically developed for them by their hospital care team.

Useful External Resources

• Exercise (CF Physio 4 Kids)
• Beam CF Youth

Nutrition

Diet plays a very important role in the management of CF. In fact, nutrition is so important that a healthy body weight can be linked to better lung function. We cover this topic in detail on our Nutrition for Children page.

Medications & Procedures

Medications

Having CF means your child will be on lots of different medications. Common medications include enzymes, 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 for you and your child using positive reinforcement techniques to help them learn to swallow tablets.

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

Useful External Resources

• Inhalation Therapy 3-5 years (CF Physio)
• Inhalation Therapy 6-12 years (CF Physio)
• I Need to Take Some Medicine Social Story (PCH)
• Salt Replacement Therapy for Children & Adolescents with CF (NEMO)
• Vitamin Supplementation & CF (NEMO)

Procedures

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

We have the following factsheets available on some common procedures:

Useful External Resources

• Bronchoscopies for Monitoring Young Children with CF (PCH)
• Preparing for your Child’s Bronchoscopy (PCH)
• I Need a Cannula Social Story (PCH)
• How is Lung Function Measured (CF Physio)
• Central Venous Access: Care of Implanted Devices (PCH)
• Central Venous Access: Care of Tunnelled Lines (PCH)
• Flexible Bronchoscopy (PCH)
• PICC (PCH)

Infection Prevention & Control

Thick, sticky mucus can build up in the lungs of people with CF, allowing germs to thrive and multiply and lead to infections. Germs can spread either by direct (person-to-person) or indirect (surfaces) contact, or by air.

Fortunately, there are steps that people with CF, their families and caregivers can take to reduce the risk of germs including good hand hygiene, following cross-infection guidelines, avoiding people who are unwell and adhering to the National Immunisation Program.

Good Clean Hands is a 3-minute video suitable for children aged 3-8, all about hand washing and ways to minimise spreading germs.

Useful External Resources

• Children Medically at Risk & Immunisations (PCH)
• Influenza Vaccine for Children (PCH)
• Infection Control (CF Physio)

Comorbidities & Complications

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

Useful External Resources

• CFRD (PCH)
• Urinary Incontinence & CF (PCH)
• I Need an Abdominal Ultrasound Social Story (PCH)

Emotional Wellbeing

Parent Wellbeing

If you or your partner are struggling, our psychosocial team can provide support and links to further support as needed.

Child Wellbeing

If you think your child is struggling with any aspect of CF, you can get a referral to the social worker or psychologist at Perth Children’s Hospital (PCH). You can also contact our psychosocial team for more support.

Procedural Anxiety

Procedural anxiety is common among children with CF and there are many resources to help you support your child during an admission or procedure. Comfort positioning, distraction techniques, breathing techniques and more are all great ways to minimise stress for your child.

KKind (Keeping Kids in No Distress) is a program at PCH designed to minimise trauma, anxiety and distress caused by illness, injury and being in hospital. Contact them to find out more information.

Useful External Resources

• Clinical Holding (KKIND)
• Developmental Stress & Comfort Cheat Sheet (KKIND)

Behavioural Support

Let’s face it, there is no guidebook for parenting. Every child is different and having a child with CF adds extra complexity and stress. CFWA has resources to help support:

• Developing routines
• Physio tips for toddlers and young children
• Procedural anxiety
• Creating positive mealtimes

We can also provide parenting advice and referrals to community programs where needed. Here are some tips for basic strategies you can implement at home to help your child:

Clinic & Hospital

Clinic

Regular reviews are crucial for timely detection and prevention of complications. Routine reviews are conducted three monthly, but more frequent, tailored reviews may be needed when unwell.

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

They recommend bringing the following along to clinic appointments:

1. List of required medications
2. Physiotherapy equipment including a sachet of Hypertonic Saline and Ventolin if your child uses this for physiotherapy
3. Sputum sample from the day of your clinic appointment

You should feel confident to speak with any member of the CF team about any questions or concerns you may have about your child’s health.

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.

First Hospital Admission

If you are preparing for your child’s first admission you might like to read the following factsheet:

We also have our My First Admission videos (please note that some of the information will be outdated since the opening of the new children’s hospital).

CFWA offer support during admissions including:

• An inpatient Hospital Bag with lots of age-appropriate, fun items delivered by a member of the CFWA services team. Let us know when you’re in.
• Hospital Snack Packs are available on the ward. Please ask a nurse to receive yours.
• Travel and parking subsidy for hospital appointments and admissions.

PCH recommend bringing the following to hospital during admissions:

1. List of your child’s current medication
2. Physiotherapy equipment including all nebuliser pots
3. Nebuliser units, if they are due for servicing
4. Enclosed/running shoes
5. Gym clothes
6. Drink bottle
7. Comfort items i.e toys, blankets, books etc.

Useful External Resources

• Coming to Stay in Hospital (PCH)
• Your Guide to PCH (PCH)
• At the Hospital: Helping My Child Cope (KKIND)
• At the Hospital: Helping My Teen Cope (KKIND)
• Helping My Child Cope After Hospital: What Parents and Caregivers Can Do (KKIND)
• CF Milestones by Age (CFRise)

Transition

Transition is the process of moving your child’s care from PCH to Sir Charles Gairdner Hospital (SCGH). The time at which your child transitions is a group decision made by you, your child and the medical team. It usually happens at 18 years of age, however it might happen earlier or later, depending on how ready your child is.

We can help you through the process by taking you and your child on a tour of SCGH to see the ward and meet with the CF care team. Transition can be an anxious time, so being prepared and understanding of the process can really help. Contact our services team on services@cfwa.org.au for further support or information.

Useful External Resources

• Supporting Your Young Person Through Transition to Adult Health Services (PCH)
• Useful Resources for Transition (PCH)
• Useful Tips for Transition (PCH)
• Differences Between Paediatric and Adult Health Care (PCH)
• A Transfer of Responsibilities (CFRise)

School & Daycare

Our CFSmart education program is a free resource for teachers and educators to improve understanding of CF in an education setting. It includes free e-Learning modules for teachers/educators as well as downloadable resources. Our Education Coordinator can work with parents to develop a CF Action Plan with detailed information about the individual needs of your child at school or daycare. We are able to provide further support to the school/daycare if required.

School Resources

Factsheets for teachers and educators are available on the CFSmart website.

Travel

Travel takes planning, however travelling with a child with CF can involve extra organisation to ensure the trip goes smoothly. Our travelling with Children factsheet provides information on reciprocal health care agreements, travel insurance, health preparation, medications, eating, drinking and cross-infection, links to useful resources and suggestions for travel activities. Our Social Worker may also be able to provide advice around insurance, please contact 08 6224 4100 for more information.

Useful External Resources

• Travel Advice for Children & Families (PCH)

General Health