Managing your child’s lung condition

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. Don’t be afraid to ask questions – the more you understand about your child’s condition the better you will be able to help 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, or will they have it for life?
• Is the condition progressive (gets worse over time)?
• What’s the long-term outlook?
• What has caused my child to have this condition?
• How will the condition affect my child?
• Is there a cure?
• 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?
• How can I explain my child’s condition to them and to other children?
• How can I explain my child’s needs to their school or nursery?
• What could their school or nursery do to help?
• What should I do if I’m worried my child is very unwell?
• When should I seek help from a doctor?
• When do I need to call 999?

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 ones 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 your child has from birth – although you might not see symptoms straight away.
• genetic or hereditary: means a condition inherited from a child’s biological parents/family.
• acquired: a condition your child develops after birth that they didn’t have when they were born.

Words to describe when the condition will affect your child:

These words can be used to refer to infections or to other types of condition:

• 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 three months to be called chronic, but it could last a lot longer).
• long-term: a condition your child may always have.

You may meet lots of health care professionals who will ask you similar questions. It can help to keep a note of important information to help you remember all the details such as:

• 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, and any relevant biological family health records.
• 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, and where and when they had them.
• An up-to-date list of all the medicines your child is taking, including pills and tablets, liquid medicines and inhalers.
• An up-to-date list of any allergies your child has.
• Notes about things that are of concern to you, your child or anyone else who cares for your child, like family of the nursery/school.
• As much as you can remember about the pregnancy and the results of any tests that were carried out.
• As much as you can remember about the birth and any problems that happened.
• As much as you can remember about your child’s developmental milestones such as when they started sitting, crawling, walking.

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 your child’s condition, such as an asthma action plan.

We’re campaigning for everyone (adults and children) 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.

• 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 are trained in 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.

It can help to know what else you can do 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, coughs, coronavirus, and flu.
• Wash your child’s hands after coming into contact with bacteria (such as after using the toilet and using public transport). You should wash your hands and your child’s when returning home from being outside, and before eating. When your child is old enough, encourage them to regularly wash their hands (or use anti-bacterial hand gel) and explain why it’s important.
• Try to keep toys clean by washing soft toys, and wiping toys down with anti-bacterial wipes or soap and water. Bath toys should be rinsed and dried out after use.
• Never smoke or allow anyone else to smoke near your child.
• Make sure your house doesn’t have damp or mould. Read more about improving the air quality in your home.
• Keep your home well aired and heat your home to at least 18°C in the winter.
• Avoid using cleaning chemicals, sprays and air fresheners that might irritate breathing.
• Make sure your child is up to date with their vaccinations, including flu and coronavirus.