About this topic
Cystic fibrosis is also called CF. It causes very thick mucus to build up in parts of the body. When this happens in the lungs, it causes many infections. Having so many infections may damage the lungs. Fluids can also build up in the liver, bowels, and other organs of the body. Your childs body may not be able to break down and absorb foods the right way. Growth may be affected. Your child may have abnormal bowel movements. Cystic fibrosis makes sweat very salty. Too much salt will then be lost when your child sweats. This causes an upset in balance of important minerals in the body. It can lead to many other serious problems like too much fluid loss, low blood pressure, and weakness. ‚
There is no cure for cystic fibrosis. Your doctor will work to treat the signs. Your child may need extra oxygen or a feeding tube. If there is very bad damage to the lung, a transplant may be suggested. ‚
What care is needed at home?
- Ask your doctor what you need to do when you go home. Make sure you ask questions if you do not understand what the doctor says. This way you will know what you need to do to care for your child.
- Give your child all drugs as ordered by your doctor.
- Learn how to do chest physical therapy. You will need to know how to do this to help clear your childs lungs. You may need to do this a few times each day.
- Keep your child away from people who smoke. Do not let anyone smoke in your home.
- Avoid exposing your child to dust, chemicals, and molds.
- Have your child drink 6 to 8 glasses of fluids each day.
- Wash your hands and your child's hands often to prevent infection. Alcohol-based hand sanitizers also work to kill germs.
- Tell family and friends about your child's health problem and how they can help.
What follow-up care is needed?
- Your doctor may ask you to make visits to the office to check on your childs progress. Be sure to keep these visits.
- Your doctor may send your child to experts who work with CF patients.
- Your doctor may suggest counseling. This many help you learn more about your child's diet, activity level, and breathing needs. It is important that you learn how to manage and cope with your child's illness.
- Ask your doctor if your child should get a flu shot or other vaccines.
What drugs may be needed?
The doctor may order drugs to: ‚
- Prevent or fight an infection
- Thin mucus
- Open airways
- Break down foods in the bowels
- Help balance minerals lost from sweating
- Treat hard stools
Your doctor may suggest you give your child vitamins. ‚
Will physical activity be limited?
Exercise is important for all children. Talk with the doctor about the right amount of exercise for your child. ‚
What changes to diet are needed?
Your child may need to be on a special diet. Your child may need to eat a diet that is high in calories, salt, and fat. Talk with your doctor or a dietician about the right diet for your child. ‚
What problems could happen?
- Lung problems
- Bowel problems
- Liver problems
- Bone thinning
- Diabetes
- Poor weight gain
- Not able to have children
- Death
What can be done to prevent this health problem?
There is no way to prevent cystic fibrosis. People with a family history of CF may want to have genetic testing before having a child. ‚
When do I need to call the doctor?
- Signs of infections. These include fever of 100.4 ‚ °F (38 ‚ °C) or higher, chills.
- Blood in the mucus, change in color of mucus, or more mucus than normal
- More trouble breathing
- Coughing up blood
- Swelling or bloating of the belly or belly pain
- Weight loss or not wanting to eat
- Very bad hard or loose stools
- Stools are foul-smelling or have lots of mucus
- Health problem is not better or your child is feeling worse
Helpful tips
Join a support group. Talking with other people who have this health problem may help you and your child to cope. ‚
Teach Back: Helping You Understand
The Teach Back Method helps you understand the information we are giving you about your child. The idea is simple. After talking with the staff, tell them in your own words what you were just told. This helps to make sure the staff has covered each thing clearly. It also helps to explain things that may have been a bit confusing. Before going home, make sure you are able to do these: ‚
- I can tell you about my childs condition.
- I can tell you what I can do to help my child breathe more easily and how to do chest physiotherapy.
- I can tell you what I will do to keep my child and others from getting sick.
- I can tell you what I will do if my child has blood in the mucus, more mucus, a change in the color of the mucus, or is having more trouble breathing.
Where can I learn more?
Cystic Fibrosis Foundation ‚
http://www.cff.org/AboutCF/ ‚
Cystic Fibrosis Canada ‚
http://www.cysticfibrosis.ca/en/index.php ‚
KidsHealth ‚
http://kidshealth.org/parent/medical/lungs/cf.html ‚
National Heart Lung and Blood Institute ‚
http://www.nhlbi.nih.gov/health/health-topics/topics/cf/ ‚
National Organization for Rare Diseases ‚
http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/24/viewAbstract ‚
NHS Choices ‚
http://www.nhs.uk/conditions/cystic-fibrosis/pages/introduction.aspx ‚
Consumer Information Use and Disclaimer
This information is not specific medical advice and does not replace information you receive from your health care provider. This is only a brief summary of general information. It does NOT include all information about conditions, illnesses, injuries, tests, procedures, treatments, therapies, discharge instructions or life-style choices that may apply to you. You must talk with your health care provider for complete information about your health and treatment options. This information should not be used to decide whether or not to accept your health care providers advice, instructions or recommendations. Only your health care provider has the knowledge and training to provide advice that is right for you. ‚
Copyright
Copyright ‚ © 2015 Clinical Drug Information, LLC and Lexi-Comp, Inc. ‚