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.
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:
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.
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.
Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Childhood Interstitial Lung Disease, visit www.clinicaltrials.gov.
Visit Children and Clinical Studies to hear experts, parents, and children talk about their experiences with clinical research.
November 20, 2013
Gary H. Gibbons
New NHLBI Program Trains Scientists to Bring More Science Out of the Lab and into the Patient Care Marketplace
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