Children's Interstitial Lung Diseases (cHILD) | Familial IPF | Connective Tissue Interstitial Lung Disease (CTILD) | Lymphangioleiomyomatosis (LAM) | Pulmonary Alveolar Proteinosis (PAP) | Alpha-1 Antitrypsin Deficiency (Alpha-1)
Rare Interstitial Lung Disease
Pediatric
Children's Interstitial Lung Diseases (cHILD)
What is chILD?
Children's Interstitial Lung Disease (chILD) is a group of rare lung diseases found in infants, children and adolescents. Many of these diseases can present with similar symptoms; this set of symptoms has been called the chILD syndrome. The diseases are different though, and severity of disease and long-term outcomes may be very different.
Does ILD affect adults?
Adults can also suffer from ILD. The most common and severe form is usual interstitial pneumonia/ idiopathic pulmonary fibrosis, which has not been found in infants and young children. The term "Idiopathic Pulmonary Fibrosis" however means scarring of the lungs for unknown reasons, which can occur in children. However, the adult versions, even if they have the same name, may not be the same disease process in infants and young children. Because the forms are different, children who have or may have chILD, should see a pediatric pulmonologist ideally with experience in chILD.
What are some symptoms of chILD?
Because there are so many forms of chILD, your child may have all or some of the symptoms listed below. Children who present with many of these symptoms have ILD syndrome and should have further tests to try to determine the specific form of chILD. The best way to do this is to work closely with pediatric pulmonary doctors. 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.
Possible symptoms:
- Fast breathing
- Use of "helper" muscles while breathing (You may notice that the child's ribs or neck muscles stand out while breathing in. In other words, you can see your child working hard to get the air into their lungs.)
- 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
Is there one test to diagnose chILD?
At this time, there isn't. Because of the numerous forms of chILD, there is not one specific test. Before giving a diagnosis of chILD, doctors must rule out other possible causes of the symptoms. In order to rule out those other possible causes, the doctors must perform several kinds of tests.
- cystic fibrosis
- asthma
- acid reflux
- cardiac (heart) disease
- aspiration
- scoliosis
- chest wall abnormalities
- nuero-muscular disease
- immune deficiency
Even after ruling out these other possible conditions, frequently the only way to determine what form of chILD your child has is to perform a lung biopsy. Known genetic conditions that involve surfactant mutations can be evaluated with genetic testing on blood. As we learn more through research, it may be possible in the future to recognize different forms without a lung biopsy.
*Note that your child may have some of the above issues (such as reflux) as well as chILD!
Was my child born with chILD?
We don't understand all of the causes of chILD. Some children are affected at birth. Still others are not affected until later in childhood. There are some children that appear to be perfectly healthy until they catch some kind of other illnesses, (ie: colds, RSV, and or Bronchiolitis).
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.
What are some of the forms of chILD?
- Surfactant Protein Deficiency (several subforms of this exist as well)
- Chronic Bronchiolitis
- NeuroEndocrine Hyperplasia of Infancy (NEHI) also known as Persistent Tachypnea of Infancy
- Hypersensitivity Pneumonitis (HP)
- Connective Tissue Lung Disease
- Bronchiolitis Obliterans (OB)
- Bronchiolitis Obliterans Organizing Pneumonia (BOOP)
- Pulmonary Interstitial Glycogenosis (PIG)
- Growth Disorders
- Development disorders such as Alveolar Capillary Dysplasia (ACD)
Join the Contact Registry for Rare Interstitial Lung Diseases | Find a Study | Web Site for the chILD Foundation | Advocacy Groups | Back to RLDC Disease Main Menu
Adult
Familial IPF
Discription for this disease coming soon
Join the Contact Registry for Rare Interstitial Lung Diseases | Find a Study | Advocacy Groups | Back to RLDC Disease Main Menu
Connective Tissue Interstitial Lung Disease (CTILD)
Discription for this disease coming soon
Join the Contact Registry for Rare Interstitial Lung Diseases | Find a Study | Advocacy Groups | Back to RLDC Disease Main Menu
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