Children’s interstitial lung disease (chILD)

Diagnosing chILD

Diagnosing chILD can be difficult, as the symptoms could be caused by other conditions. Your child will have tests and investigations to diagnose it and decide the best treatment.


How is chILD diagnosed?

Diagnosing chILD can be difficult. Your child may need to have different investigations to rule out other conditions as well as tests to diagnose chILD.

Your doctor will ask you about the medical history of your child and your family. In particular, they will want to know about any family history of lung diseases starting in early childhood. They will listen to your child’s chest. They may also ask about where you live and your home environment. Make sure you get the most out of your doctor’s appointment.

If your doctor thinks that your child has chILD they will refer them for more tests to diagnose chILD and work out the best way to treat it.

Tests and investigations

Your child may have the following tests and investigations. These can diagnose chILD and assess how severe it is.

  • X-rays. Your child may need an X-ray to diagnose chILD. They may also have a high resolution computer tomography (HRCT) scan which can show doctors more about the abnormality and help them decide the best areas to do a lung biopsy from.
  • Laboratory tests on your child’s blood, sweat, stool or mucus are used to rule out other possible conditions but can also give information to help diagnose chILD.

Genetic testing and chILD

Genetic testing is now available for some chILD conditions. The number of genes we know about that cause different types of chILD and DLD is increasing. A blood test can identify these genes, and if it does, there may no need for a lung biopsy.

As well as being less intrusive, genetic testing is more specific than a biopsy.

  • Measurements of oxygen levels in your child’s blood. This test, called pulse oximetry, involves having a small light sensor taped, usually, to a fingertip or toe. It isn’t painful for them.
  • A breathing test (infant pulmonary function test or infant PFT) may be used to test how your child’s lungs work.
    ​Older children may be given a lung volume test. Children aged six can usually manage this successfully, and some can do it before they are six. The test involves sitting in a box about the size of a phone box. Your child will be asked to breathe out into a mouthpiece and then breathe in. The machine measures the amount of air your child’s lungs can hold.
  • Looking inside your child’s lungs. If other tests have not helped the doctor make a diagnosis, they may want to look inside your child’s lungs and possibly remove some cells or tissue for testing.
    1. Bronchoscopy. A narrow, flexible tube with a camera on the end is used to look inside your child’s lungs.
    2. Lung biopsy. A surgeon makes a small cut in your child’s chest and removes some tissue from the lung under general anaesthetic. This can sometimes be done using keyhole surgery.

Further information:

Find out more about diagnosing chILD from the Child Lung Foundation.


How are chILD conditions treated?

The best treatment for your child can depend on what condition they have. They will be cared for by a range of different health care professionals. These may include respiratory consultants, radiologists, physiotherapists, dieticians and nurse specialists. More research is still needed to find treatments for different chILD conditions.

Common treatments for chILD conditions

Oxygen therapy

If the level of oxygen in your child’s blood is too low, your child may be given oxygen therapy. This means your child breathes air that is richer in oxygen. Depending on your child’s age and size, it’s delivered in different ways - through an incubator, a face mask or a tube up your child’s nose (called a nasal cannula). If your child needs oxygen regularly, you may be offered oxygen at home.

Medication

Your child may be given medication to help reduce inflammation in their lungs. This may be an anti-inflammatory drug such as steroids or an antibiotic, such as azithromycin.

Your child may be given medication all the time or in short bursts to try to avoid side effects.

Treatment for reflux

If your child experiences reflux (where the contents of the stomach are bought up into the mouth and may be breathed in), this should be treated as part of treatment for chILD.

Rare treatment: Lung transplant

In rare, extreme cases where other forms of treatment haven’t worked, your child may be offered a lung transplant. Although lung transplants have been shown to be an option for some children, a high proportion of children who have lung transplants develop serious complications.

The chILD Lung Foundation website has more info on treatment for specific conditions.


What else can I do to help?

  • Do not smoke, or let others smoke, around your child and try to avoid exposing your child to a lot of air pollution. Have a look at our pages on risks to children’s lung health for more information.
  • Make sure your child’s vaccinations are up to date and ask your doctor about the flu and pneumonia vaccine.
  • Make sure your child stays active and gets regular exercise. This can help keep their lungs working well.
  • Make sure they have a healthy diet and drink enough water. Fighting infection and coughing can use up your child’s energy so they may need more food than usual. Their immune system will need plenty of protein and vitamins to fight infection. The NHS website has useful info about feeding your child.
  • Avoid infection where possible. Teach your children to use a disposable tissue and wash their hands after coughing and sneezing and make sure that you do too. We’ve got more information about what you can do to avoid infection.

If you have concerns or need advice, call our helpline on 03000 030 555 between 9am and 5pm on a weekday or email them.

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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.