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Children

Bringing up a child with CF can raise many questions because CF affects many aspects of your and your child’s life. We are here to help you and can provide services and resources to support your family throughout your journey.

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.

For more information about this service, contact our physio Sam via email sam.wallace@cfwa.org.au or on 08 6224 4100.

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

To read more articles and member stories on airway clearance and routines, click here.

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Exercise

Exercise is considered a key aspect of treatment for people with CF, with improvements in lung function, strength, fitness levels and overall quality of life.

Exercise Support

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

  • 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.
  • Family Support Subsidy can be accessed annually to help cover the costs associated with sporting fees or physio/exercise equipment.

For more detailed information about CF and exercise, read our factsheet:

To read more articles and member stories on exercise, click here.

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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 have a range of resources available to help you manage your child’s diet.

Our CFFood resources provide detailed information about CF and diet. These resources are available in hard copy upon request. Contact gillian.hoyland@cfwa.org.au.

The CFCooking program has a range of healthy recipes and cooking demonstration videos, featuring people with CF, on topics including:

For more information, we have the following downloadable factsheets relating to nutrition:

To read more articles and member stories on nutrition, click here.

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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. Our nurse Sharon can come to your home and work one-on-one with your child using positive reinforcement techniques to help them learn to swallow tablets. Your child will also receive a fun certificate and prize once successful, as a reward for their hard work. To set up a session or for more information, contact Sharon via email sharon.dewar@cfwa.org.au.

Watch Sharon at work teaching Lennox how to swallow tablets:

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

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Procedures

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

We have the following factsheets available on some common procedures:

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Infection Prevention & Control

People living with CF are at greater risk of getting lung infections than those who don’t have the condition. That’s because the thick, sticky mucus builds up in the lungs, allowing germs to thrive and multiply. 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 avoid germs including good hand hygiene, following cross-infection guidelines, avoiding people who are unwell and adhering to the recommended immunisation schedule.

See our factsheets for detailed information about how germs can affect those with CF and how to minimise risk:

Resources for Children

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

Do Not Lick This Book (CF special edition). CFWA worked with the author and illustrator of this engaging book to include extra CF-specific pages, highlighting germs in the CF lung. Here is a reading of the book. To get your own personalised copy, please contact gillian.hoyland@cfwa.org.au.

How Germs Spread is a short educational video to show children how germs spread. You can also watch How to Wash Your Hands and Why Soap is Important.

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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. You might like to read our factsheets for more information:

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Emotional Wellbeing

Parent Wellbeing

If you or your partner are struggling, our social workers can provide support and links to further support as needed. We have a dedicated page for Parents and Other Carers, providing information, links to support services and sharing parent stories.

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). CFWA’s social workers can also offer support.

Building Resilience Program

Our Youth Social Worker Haylee can support young people (~8-11 yrs) through our Building Resilience Program. The program uses age-appropriate activities and resources to promote positive mental health, build resilience, address worries and misinformation about CF and encourage independence over CF treatments.

Getting children used to talking about their feelings at a younger age has positive outcomes for future mental health and encourages children to recognise if they are feeling worried and provide them with health tools and strategies to process these emotions.

If you think this program would benefit your child, please contact Haylee on haylee.riddell@cfwa.org.au or phone 08 6224 4100.

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.

To read more member stories on emotional wellbeing, click here.

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Behavioural Support

Calm Kids, Happy Families Program

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 now offer one-on-one support and guidance with our experienced paediatric Occupational Therapist, Mel through our Calm Kids, Happy Families program.

Mel can help you and your child with:

  • Developing routines
  • Calming and de-escalation techniques
  • Meal and bedtime assistance
  • Behaviour management techniques
  • Consistent parenting
  • Positive communication

Read the factsheet below for more information about OT:

You can hear more about the program here:

Here are some tips from Mel for basic strategies you can implement at home to help your child:

For more information about the program, please contact Mel on mel.tibbitts@cfwa.org.au or 08 6224 4100.

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 HTS 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 or experiencing anxiety around this, you might like to read the following factsheets:

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).

Admissions

Your child will have ongoing admissions as needed. CFWA offer support during admissions including:

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.

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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 nurse Sharon on sharon.dewar@cfwa.org.au for further support or information.

This film “Transition to Adult Care: Parents’ Perspective” by Cystic Fibrosis Community Care, shares parents’ perspectives on their transition experience.

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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.

For more information or support, contact our Education Coordinator Sharon on 08 6224 4100 or sharon.dewar@cfwa.org.au.

This short film is a great resource for teachers and students learning about CF:

Information Booklets

Factsheets

To read more articles and member stories on school, click here.

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.

For more articles and member stories about travel, click here.

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