Living With Childhood Interstitial Lung Disease

Caring for a child who has childhood interstitial lung disease (chILD) can be challenging. However, you can take steps to help your child manage his or her disease.

Make sure your child gets ongoing care and seek support to help you, your child, and your other family members cope with the effects of chILD on daily life.

Ongoing Care

Work with your child's health care team to manage your child's symptoms and keep him or her as healthy as possible.

This team may include doctors, nurses, dietitians, social workers, physical therapists, and home health aides. Each of these specialists may have services that can help you and your child cope with his or her lung disease.

You also can take other steps to help manage your child's care. For example:

• Give your child all of his or her prescribed medicines. Make sure to take your child to all followup medical visits.
• Work with your child's health care team to ensure that your child is getting good nutrition. Your child's health care team also can suggest physical activities that meet your child's needs.
• Ask your child's doctor about warning signs of worsening lung disease and when to seek emergency medical care. Agree on a plan of action if these warning signs occur.
• Keep complete records of your child's care and any instructions you receive. This information can help you manage care at home and inform various doctors about your child's medical history and status.

Many children who have chILD need oxygen therapy to help them breathe easier. Portable oxygen units can make it easier for your child to move around and do many daily activities.

If your child's doctor prescribes oxygen therapy, work with a home equipment provider to make sure you have the supplies and equipment you need. Trained personnel will show you how to use the equipment correctly and safely.

Ongoing Support

Your child may need support to help other people in his or her life understand the special needs related to chILD. For example, you may want to talk with your child's teachers about your child's illness. You can work with the teachers to decide how to meet your child's special school-related needs.

You also may want to alert relatives, caregivers, friends, and parents of friends about your child's illness. Let them know about your child's usual care and any signs or symptoms that require emergency care.

Taking care of yourself also is important. Managing your child's disease and ongoing care can be stressful. You and your family members may feel sad, guilty, or overwhelmed.

Social workers and mental health providers can help you cope with your feelings and provide support. They also can connect you with family support groups. Taking part in a support group can show you how other people have coped with chILD.

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