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When your child is diagnosed with a lung condition

Managing your child’s lung condition: resources for parents

Knowing the right information can make you feel more confident in managing your child’s lung condition.

On this page we have information on:

What should I ask the doctor?

Having the right information about your child’s lung condition will help you feel more confident about caring for them. You might want to ask your GP or paediatrician (a doctor specialising in children’s health) 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?
  • Can other people catch it, 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 are 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?

Useful definitions describing children’s lung conditions

As well as the diagnosis itself, you’ve probably heard lots of different words used to describe your child’s condition. We’ve explained the main words for you here. More than one of these words can be used to describe the same condition.

Words to describe the causes of your child’s condition:

  • congenital: means a condition that your child has from birth – although you might not see symptoms straight away
  • genetic or hereditary: a condition that is passed on to a child by their parents
  • acquired: a condition that your child develops after birth that was not present when they were born

Words to describe when the condition will affect your child:

  • episodic: a condition that comes and goes – there will be times when your child has symptoms and times when your child does not
  • recurrent: used to talk about symptoms that come back time and time again
  • chronic: a condition or disease that lasts a long time (a condition typically has to last over 3 months to be called chronic, but it could last a lot longer)
  • long-term: a condition that your child may always have

The above words can be used to refer to infections or to other types of condition.

What records should I keep?

You may meet lots of 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
  • a list of the different tests they’ve had, such as lung function tests or chest X-rays
  • an up-to-date list of all the medicines that your child is taking, including pills and tablets, liquid medicines and inhalers
  • notes about things that are of concern to you, your child or anyone else in the family.

It can also help to keep a record of all your child’s appointments on a calendar, in a diary or in your phone.

Ask for copies of any specialist reports being sent to your GP.

Care and support plans

You may be given information to help you keep track of particular conditions, such as an asthma action plan.

The BLF is campaigning for everyone with a lung disease to have a personalised care and support plan. Find out how we’re helping patients and families keep track of their care.

How can I manage my child’s medication and equipment?

  • 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 spacer or nebuliser - make sure you know how to use it and ask your child’s doctor or other health care professional to show you if not.
  • If they are on home oxygen or have a home ventilator, make sure you know how to keep the equipment in good working order and who to ask if there are any problems with it. If you feel unsure, always 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.

What can I do to make my home lung friendly?

It can help to know what else you can do right now to help make your child’s home as lung and breathing friendly as possible.

  • Try to avoid people who have signs of respiratory infections such as colds and coughs.
  • Wash your child’s hands after coming into contact with bacteria (such as after using the toilet or potty, using public transport and when you get home from the park), and try to keep toys clean. Bath toys should be rinsed and dried out after use.
  • Never smoke or allow anyone else to smoke in your house or near your child.
  • Make sure your house doesn’t have damp or mould.
  • Keep your home well aired and at a temperature between 18 - 21°C.
  • Avoid using cleaning chemicals, sprays and air fresheners that might irritate breathing.

Further information:

Next: Babies, toddlers, children and adolescents: supporting your child as they grow >

We use your comments to improve our information. We cannot reply to comments left on this form. If you have health concerns or need clinical advice, call our helpline on 03000 030 555 between 9am and 5pm on a weekday or email them.

Last medically reviewed: September 2019. Due for review: September 2022

This information uses the best available medical evidence and was produced with the support of people living with lung conditions. Find out how we produce our information. If you’d like to see our references get in touch.