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Discharge Instructions for Cystic Fibrosis

Cystic fibrosis (CF) is an inherited disease that causes lung and digestive problems.

Steps to Take

Home Care

Take steps to make it easier for your child to breathe:

  • Use a humidifier to help keep mucus loose.
  • Clear your child's airway as you were taught by the care team.
  • Keep your child from allergens or irritants in the air, such as pollen, dust, and smoke.

Diet

Digestion problems can slow growth and affect your child's health. A dietitian can create a healthful diet that will help. Follow the diet your child was given.

Your child can become dehydrated easily, such as when the weather is hot or he or she is sick. This can make mucus thick and make it hard for your child to breathe. More fluid can help thin mucus. Your child will also need to replace salt lost through sweating. You can add it to meals and snacks.

Physical Activity

Exercise can help your child's lungs and heart work better. It also has mental health benefits.

Medications

Medicine may be given to:

  • Reduce mucus
  • Relax airways
  • Ease swelling and irritation
  • Treat or prevent a lung infection

Vitamins and supplements may also be given to support your child's nutrition needs.

If your child is taking medicine:

  • Give your child the medicine as advised. Do not change the amount or schedule.
  • Use the measuring device that came with the medicine. If you need to use a spoon, cup, or syringe, make sure it has the units that match your child’s prescription. For example, if the medicine is given in mL (milliliters), the device should have mL on it.
  • Be aware of the side effects of your child's medicine. Let the doctor know if any happen.
  • Talk to your child's doctor before stopping any prescription medicine.
  • Don't share your child's prescription medicine.
  • Medicine can be harmful when mixed. Talk to your child's doctor or pharmacist if your child is taking more than 1, including over the counter products and supplements.
  • Plan for refills.

Lifestyle Changes

Your child is at greater risk of infection. To lower the risk:

  • Wash your child's hands often.
  • Keep your child from people who are sick.
  • Make sure your child gets the vaccines advised by his or her care team.

CF can be stressful for your child and your family. Counseling and support groups can help.

Follow-up

The doctor will need to monitor your child closely. Take your child to all appointments and tests.

Call Your Child's Doctor If Any of the Following Occur

Call the doctor if your child is having a hard time managing cystic fibrosis or has:

  • Signs of infection, such as fever and chills
  • Trouble gaining weight, weight loss, or problems eating
  • More coughing and wheezing or problems breathing
  • Not been able to exercise
  • Diarrhea or belly pain
  • Yellow skin color
  • New or worsening symptoms

If you think your child has an emergency, call for medical help right away.

RESOURCES:

American Lung Association
http://www.lung.org

Cystic Fibrosis Foundation
http://www.cff.org

CANADIAN RESOURCES:

About Kids Health—The Hospital for Sick Children
http://www.aboutkidshealth.ca

The Lung Association
http://www.lung.ca

REFERENCES:

About cystic fibrosis: what you need to know. Cystic Fibrosis Foundation website. Available at: http://www.cff.org/AboutCF. Accessed July 18, 2019.

Antibiotics for cystic fibrosis (CF). EBSCO DynaMed website. Available at:https://www.dynamed.com/management/antibiotics-for-cystic-fibrosis-cf. Updated October 1, 2018. Accessed July 18, 2019.

Chest physical therapy: performing in pediatric patients—an overview. EBSCO Nursing Reference Center website. Available at:https://www.ebscohost.com/nursing/products/nursing-reference-center. Updated May 17, 2019. Accessed July 18, 2019.

Cystic fibrosis. Healthy Children—American Academy of Pediatrics website. Available at: http://www.healthychildren.org/English/health-issues/conditions/chronic/Pages/Cystic-Fibrosis.aspx. Accessed July 18, 2019.

Cystic fibrosis. National Heart, Lung and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/cf. Accessed July 18, 2019.

Cystic fibrosis (CF). EBSCO DynaMed website. Available at:https://www.dynamed.com/condition/cystic-fibrosis-cf. Updated July 1, 2019. Accessed July 18, 2019.

Last reviewed June 2019 by EBSCO Medical Review BoardKari Kassir, MD  Last Updated: 12/6/2019