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Children’s Interstitial Lung Disease (chILD) is a group of rare lung diseases found in infants, children and adolescents. There are a large number of interstitial and diffuse diseases which fall under the chILD umbrella. Many of the diseases, although having very different causes, will present with similar symptoms and signs, and these form part of the ‘chILD syndrome’. The main feature of chILD is that oxygen has problems passing into the bloodstream via the lungs, and there are variable degrees of lung scarring.
The severity of disease and long term outcomes will vary considerably from person to person. If you are a parent/carer for a chILD sufferer please contact their specialist for medical advice as they may be able to indicate the disease course. Do not be surprised if they cannot. ChILD are a relatively new and unresearched group of diseases. Generally some children may grow out of their condition, others will need lung transplantation and sadly others may die.
Some examples of chILD are:
- Surfactant Protein Deficiency (and their subforms)
- Chronic bronchiolitis.
- NeuroEndocrine Hyperplasia of Infancy(NEHI) or Persistent Tachypnea of Infancy
- Hypersensitivity Pneumonitis (HP)
- Connective Tissue Lung Disease
- Bronchiolitis Obliterans (OB)
- Pulmonary Interstitial Glycogenosis (PIG)
- Growth disorders
- Development disorders such as Alveolar Capillary Dysplasia (ACD)
Adults can also suffer from Interstitial Lung Disease; however chILD should not be confused with these as even when they have the same name, they are often very different diseases.
What are some symptoms of chILD?
Possible clues include:
- Fast breathing
- Use of "helper" muscles while breathing (You may notice that the child's ribs or neck muscles stand out while breathing in.)
- Abnormal chest x-rays or CT scans
- Needs supplemental oxygen
- Failure to gain weight and/or height (may be known as "failure to thrive")
- Persistent crackles, wheezing or other abnormal sounds when listening to the lungs
- Recurrent pneumonia
- Recurrent bronchiolitis
- Recurrent cough
Indeed there may be children who may have these symptoms and will not have chILD. There are many forms of chILD, so your child may have all or some of the symptoms listed. Children who present with many of these symptoms have ILD syndrome should have further tests to try to determine the specific form of chILD and rule other diseases out like cystic fibrosis or heart disease. The best way to do this is to work closely with paediatric pulmonary doctors. Before giving a diagnosis of chILD, tests doctors usually perform will be:
- X-rays
- Blood tests
- Chest imaging
- High Resolution CT scan
- Infant Pulmonary Function Tests
Many times, the definitive diagnosis may depend on a lung biopsy to examine the actual lung tissue. Many gains have been made in classifying the forms of chILD based upon what is happening in the lung, which can usually be seen by looking at the lung tissue.
How are these diseases treated or managed?
Many kids with chILD have a diverse range of care needs and may require regular monitoring by parents/carers and their medical team. The majority of chILD sufferers will need additional medications and supplemental oxygen via nasal cannula whilst others will also need to be fed via a peg (a tube placed directly in the stomach during an operation) or naso-gastric tube for supplemental feeding. A simple cold can make a chILD sufferer ill to where hospitalisation may be needed so hygiene and social management is an important factor of dealing with chILD. In severe cases ventilation or lung transplantation may be required.
Was my child born with chILD?
We do not fully understand all the causes of chILD. Some kids are affected at birth whilst others are not affected until later in life. Some kids appear perfectly healthy until they catch some other form of illness such as influenza, RSV and adenovirus. Certain forms of chILD (such as surfactant problems) are inherited through genes. Without more research it will be difficult to determine the role genetics may play in other forms of chILD.
Please check out our ‘Reference Materials’ page for more information.
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