Getting organised after your child is diagnosed with a lung condition
Knowing the right information and having it easily available when you need it can help you feel more confident and in control.
On this page:
You might want to ask your child’s doctor or paediatrician some of these questions.
- Will my child’s condition go away, will it come and go, or will they have it for life?
- What has caused my child to have this condition?
- How common is it?
- Is this it catching, or is it likely to affect other family members?
- Is my child in pain?
- What can I do at home to help my child?
- What services or specialist help is available?
- What treatment is available?
- What could the school or nursery do to help?
- What should I do if I’m worried that my child is very unwell?
You may meet different health care professionals who will ask you similar questions. It can help to keep a record of important information to help you remember all the details such as:
- notes about the pregnancy and the results of any tests that were carried out
- notes about the birth and any problems that happened
- information about your child’s developmental milestones such as when they started sitting, crawling, walking
- information about your child’s lung condition and any other health problems they have
- information about how the lung condition affects the child and the family, including brothers and sisters
- a list of the different health care professionals your child has seen, when they began to see them and their contact details
- an up-to-date list of all the medication that your child is taking, including tablets, liquid medicines and inhalers
- notes about things that are of concern to you, your child or anyone else in the family
You may be given info to help you keep track of particular conditions such as an asthma action plan.
It can also help to keep a good record of all your child’s appointments on a calendar, diary or in your phone.
- Make sure you understand what medication your child needs, what dose they need and when they should take it.
- If your child needs equipment to help them take their medication - for example a nebuliser, spacer, oxygen or a home ventilator - make sure you know how to use it and how to keep it in good working order. If you feel unsure, ask for help.
- Keep medication and equipment stored in a safe place and try not to make your home look too medical – parents have told us children can find this embarrassing.