Your child has been hospitalized with cystic fibrosis. This is an inherited, long-term disease that affects the lungs. It affects the lungs and digestive system most often. It is caused by mutations in a gene called the CFTR (cystic fibrosis transmembrane conductance regulator). These mutations causes the CFTR protein not to work correctly in the body. The defective CFTR protein causes mucus to be thick and sticky. The mucus clogs the lungs and blocks the release of enzymes from the pancreas. This may cause serious lung infections and problems with digesting and absorbing food.
There is no cure for cystic fibrosis. But there are treatments that can help your child have fewer lung infections and digestive problems and improve his or her life overall.
Help keep your child’s lungs clear of extra mucus. Learn how to do chest physical therapy on your child to help with this. This includes postural drainage and percussion. Ask your child's healthcare provider for instructions.
Medicines called CFTR modulators may be prescribed. They can help the defective CFTR protein work correctly.
Remind your child to wash his or her hands often, and correctly.
He or she should use soap and water and do a lot of rubbing. Scrub for at least 20 seconds. To help meet the time limit, sing the "Happy Birthday" song twice.
Make sure you have alcohol-based hand cleaner when soap and water aren't available.
Teach your child to keep his or her hands away from the face. Germs often get into the nose and mouth and then into the lungs this way.
Ask your child's healthcare provider about a yearly flu shot and other vaccinations.
Stay away from crowds, especially in the winter, when more people have colds and the flu.
Learn about the special dietary needs of your child. Your child may need pancreatic enzymes to help with digestion.
If prescribed, make sure your child takes pancreatic enzymes exactly as instructed.
Nutritional supplements may be advised when healthy eating is not enough. These may include calcium, multivitamins, oral pancreatic enzymes, sodium, or vitamin A, D, E, and K.
A nutritionist or dietitian can help you and your child. Ask your child's healthcare provider for a referral.
Some children have problems growing and gaining weight. Talk with your child's provider or nutritionist about which types and amounts of foods or supplements to include in your child's diet.
Oxygen therapy may be advised to treat low levels of oxygen in your child's blood when they do physical activities or are at school or work.
Encourage your child to exercise regularly and drink lots of fluids.
Your child should see their healthcare provider at least every 3 months, or as directed.
Don't let people smoke in your home, car, or anywhere near your child.
Talk with your child about the dangers of smoking. He or she should not smoke and should stay away from others who do.
Be sensitive to your child’s mental health needs. Dealing with cystic fibrosis can be overwhelming. Get professional counseling for your child and other family members as needed.
Make all follow-up appointments as soon as possible after leaving the hospital. Contact your child's healthcare provider sooner if you have any questions or concerns.
Ask about the closest Cystic Fibrosis Center. These centers specialize in caring for children and adults with cystic fibrosis. You can check the Cystic Fibrosis Foundation website: www.cff.org. Or call 800-FIGHT-CF (800-344-4823).
Call the healthcare provider right away if your child has any of the following:
Symptoms that get worse or new symptoms
Symptoms of depression
More mucus than normal, or mucus that is bloody or dark in color
Change in color of sputum
Sudden chest pain or tightness
Trouble taking part in daily activities
More tired than normal
Sudden shortness of breath or wheezing
Each child is different. So be sure you understand when to call the healthcare provider about your child's specific symptoms.
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