Managing CF

Adapting to life with a new baby with CF is quite a learning experience, especially if your child is also your first born.

The first couple of years are the ideal time to set up good expectations and routines in all aspects of life, particularly when it comes to medication and physiotherapy. A child who has ‘always’ done a task is a lot easier to keep on track than one grappling with being introduced to a new set of expectations.

It is difficult to ignore the feeling that the extra load your child has to bear is unfair. The last thing many parents want to do is impose too many restrictions on their child – but it is important for everyone in the family, especially your child.

Consistent routine and discipline can be a good way to ensure that your child feels secure. It is natural for a toddler to test the limits of boundaries but your child will feel less compelled to test out every situation if you remain consistent.

Whether for medications, doing physio or having treats, routine and discipline help teach your child self-control and, eventually, self-management of their condition.

Eventually your child will begin to take responsibility for managing their illness, and to develop into a young adult capable of handling all of life’s demands, including the demands of CF. By reinforcing the importance of treatment adherence and routine with your child, you will better equip them to eventually manage their own treatment.

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A common difficulty that families run into is feeling that they need to ‘bubble wrap’ their child and do everything for them. Although this is completely understandable, it is important to aim to treat your child as you would any other – creating and maintaining the same boundaries, expectations and developmental milestones that your child’s peers have.

Many parents of children with cystic fibrosis report difficulties with behaviour, sleeping and eating. But these are perfectly normal behaviours and your child isn’t more susceptible to developing behavioural problems because of the CF.

However, you and your toddler are often under more pressure than other families, and the increased demands on you both may change the way these common interactions take place – and leave more room for conflict. So set boundaries and be consistent.

Diet

It is more difficult for children with CF to absorb energy and nutrients from food, so their diet should compensate for this by being higher in kilojoules, fats and nutrients.

Digestive enzymes made by the pancreas help the body digest food by breaking down fats, proteins and carbohydrates. For many people with CF, mucus blocks the ducts that carry the enzymes from the pancreas to the digestive system.

People with this symptom need to take enzyme medications (such as Creon) to assist their digestion. For an infant, you can mix Creon granules in with purees and other soft food.

Physiotherapy

Physiotherapy exercises help clear the thick, sticky mucus that the body produces from the lungs and airways.

A CF physiotherapist will develop a physio treatment plan to suit your child. Many parents say that engaging their child in play or games is a great way to get them to do their physio and airway clearance exercises, for example bouncing on a trampoline or blowing bubbles.

Being physically active is also beneficial for maintaining lung function so encourage your child to take part in physical games, sports and other aerobic activities.

Cystic Fibrosis WA has produced a wide range of fact sheets that cover different aspects of managing your CF, which can be found on their website:

More information

Connect with another community member - sometimes it’s great just to talk to someone who know what you are going through. Our peer support program can connect you with others from the CF community who share similar experiences.