More about interstitial lung disease
When interstitial lung disease (ILD) is found in children it is called ChILD. This term covers a large group of rare lung diseases which all affect the interstitium (a network of tissue inside the lung).
ChILD can affect the lungs in many different ways, most commonly there is a thickening of the walls of the interstitium which makes it harder for the lungs to expand (inhale) or contract (exhale). The walls of the interstitium are where oxygen enters the body and carbon dioxide leaves.
Thickening of the interstitium can lead to a decrease in oxygen which may make a child short of breath and to make up for this they will often breathe faster. This in turn can make them use up more energy, get tired more easily and be unable to exercise for as long when compared to their peers.
With so much energy needed for breathing, children often do not gain weight and may even lose weight, even if they are eating well.
Due to the range and rareness of these diseases, some causes have been found, but some have not.
We do know that some forms of ChILD can be inherited, and your doctor could discuss whether it a genetic cause is known for your child’s condition
Some of the main signs and symptoms are below but not every child with ChILD will have all these symptoms:
- Shortness of breath
- Rapid breathing
- Difficult and heavy breathing
- Getting tired more easily than their peers e.g. frequent stopping when walking, difficulty climbing stairs
- Not gaining weight or losing weight (called failure to thrive)
- Breathing noises e.g. rattles, crackles or wheezing
- Persistent cough
- Blue tinged lips because of low oxygen levels in the blood
- Clubbed fingers (spoon shaped fingertips) and hourglass nails (rounding of the nails)
Having these symptoms does not mean your child is affected with ChILD.
In most cases, ChILD is a long-term disease and children may have a reduced lung function in adulthood, but this is not always the case.
Children can learn to live with their disease and more often than not, can improve each year as their capacity to exercise increases.
The uncertainty about what lies ahead for your child can be very difficult to deal with. Parents who have children with ChILD say it is helpful to think in small steps; to take comfort in all improvements and not to despair if there is a setback.
If your child has the signs and symptoms outlined in the section above, then contact your doctor, explain your concerns and ask whether your child should be discussed with a specialised medical centre with experience in the evaluation and treatment of children with ChILD.
Because these diseases are so rare, not many doctors will have knowledge or experience of dealing with children with ChILD.