Living with chILD

Different forms of chILD require different treatments and support. The goal of treatment for chILD is to relieve symptoms, provide support to maximize growth and development, and to prevent exposure to preventable illnesses that could make the chILD syndrome worse.

The first step in living with chILD is to learn as much as you can by talking to your physicians and reaching out to other parents for support and tips for daily living. The adjustment is never easy, but there are ways to make it more smoothly. It is also important to take care of yourself as a caregiver. A diagnosis of chILD not only affects the patient. It affects the parents, siblings and other family members in countless ways.

Oxygen Supplements

Our bodies are fueled in part by the oxygen in the air we breathe. When we breathe it into our lungs the oxygen crosses from the lungs into the blood stream. The blood then takes it to all parts of the body. Our body cells “eat” oxygen and “spit out” carbon dioxide.

Treatments

There is no single treatment for chILD and each patient will require a personalized treatment regimen. Some common treatments for various forms of chILD include:

Nutrition and Feeding

A common problem in chILD is poor growth, mainly in younger kids. Growth and lung function are closely tied. It takes more work to breathe with unhealthy lungs, so children with chILD may need extra calories. A visit with a dietitian trained to work with kids with lung diseases is a great first step in learning your child’s unique needs.

Traveling with Oxygen

You might want to find a hospital and doctor (hopefully a pediatric pulmonologist) in the place where you are going. You might want to find a pharmacy. Make sure they accept out-of-state prescriptions. Check your medicine supply to see that you have enough. Will you need extra prescriptions?

Living with Oxygen

Our bodies are fueled in part by the oxygen in the air we breathe. When we breathe it into our lungs the oxygen crosses from the lungs into the blood stream. The blood then takes it to all parts of the body. Our body cells “eat” oxygen and “spit out” carbon dioxide.

Education

Children’s Interstitial Lung Disease (ChILD) is not a single disease. Instead, it is a group of rare lung diseases found in infants, children, and adolescents. There are different types of chILD that vary in their severity and in their long-term outcomes. In simplest terms, all types of chILD decrease a child’s ability to supply oxygen to their body.