Parents' top tips

If you’re concerned about your child’s health, call your CF team and they will advise if a cough swab is needed. The cough swab will help the team find out if there are any bugs growing in the lungs, and will help guide any further treatment, such as antibiotics.

Don’t be afraid to be firm with people about what makes you comfortable. If you don’t want to go to the wedding because another guest has a cough, don’t go!

Create a checklist of items to put in your bag when going out.

Take a notebook to your appointments and write down everything your CF team says. You can also use it to write down questions you want to ask before you go.

When your baby is eating solids, you can give Creon® with apple purée – either add it on top of the spoon of apple purée or mix it well so that it can be swallowed more easily.

Make physio fun! Bounce on a gym ball, use nursery rhymes and music, do it while they watch their favourite tv show (even baby sensory videos when they are very young), and get the whole family involved.  

Gym balls are available in different sizes, so make sure you are using the most suitable one for your height and build. This will help to look after your own back when doing physio with your baby. 

Always have nasal sprays and nasal aspirators (“snot suckers”) at home.

If someone else will be looking after your baby, you could make them a chart with a table to show how much Creon® to give your baby with food. For example, X gram(s) of fat = X scoop(s) Creon®.

For a urine sample, put a small amount of cotton wool in the nappy to catch urine in babies or toddlers still wearing nappies.