Cystic Fibrosis In Children

WHAT YOU SHOULD KNOW:

Cystic Fibrosis In Children (Discharge Care) Care Guide

Cystic fibrosis (CF) is a lifelong condition that affects your child's lungs, digestive system, and other organs. His mucus, tears, sweat, and saliva become so thick and sticky that they clog his lungs and digestive system. CF typically causes problems with breathing and with breaking down and absorbing food. Cystic fibrosis is a genetic disorder. If you or close relatives have CF, there is a higher risk that your children may also have it.

AFTER YOU LEAVE:

Medicines:

Your child may need any of the following:

  • Antibiotics help fight or prevent an infection caused by bacteria.

  • Mucus thinning medicine is breathed in to help thin the mucus in his lungs so he can cough it up more easily.

  • NSAIDs help decrease swelling and pain. This medicine is available without a doctor's order. Ask your child's primary healthcare provider (PHP) which medicine is right for your child. Ask how much to give and when to give it. Follow directions. NSAIDs can cause stomach bleeding or kidney problems if not taken correctly. If your child takes blood thinner medicine, always ask if NSAIDs are safe for him.

  • Steroid medicine helps decrease inflammation.

  • Bronchodilators help open the air passages in your child's lungs, and helps him breathe more easily.

  • Pancreatic enzymes help your child's digestive system break down food and absorb nutrients properly.

  • Give your child's medicine as directed. Contact your child's PHP if you think the medicine is not working as expected. Tell him if your child is allergic to any medicine. Keep a current list of the medicines, vitamins, and herbs your child takes. Include the amounts, and when, how, and why they are taken. Bring the list or the medicines in their containers to follow-up visits. Carry your child's medicine list with you in case of an emergency. Throw away old medicine lists.

  • Do not give aspirin to children under 18 years of age. Your child could develop Reye syndrome if he takes aspirin. Reye syndrome can cause life-threatening brain and liver damage. Check your child's medicine labels for aspirin, salicylates, or oil of wintergreen.

Follow up with your child's PHP or CF specialist in 2 to 4 weeks:

Your child will need to return regularly to have his condition monitored. Write down your questions so you remember to ask them during your visits.

Oxygen:

Extra oxygen may be needed if your child's blood oxygen level is lower than it should be. He may get oxygen through a mask placed over his nose and mouth or through small tubes placed in his nostrils.

Airway clearance techniques:

Airway clearance techniques are exercises to help remove mucus so your child can breathe more easily. His PHP will teach him how to do the exercises. These exercises may be used along with machines or special devices to help decrease your child's symptoms and risk of infection.

Exercise:

Ask your child's PHP about the best exercise plan for your child. Physical activities can help loosen secretions in your child's airways and lungs, and help him breathe more easily.

Nutrition:

Give your child a variety of healthy foods. Healthy foods include fruits, vegetables, whole-grain breads, low-fat dairy products, beans, lean meats, and fish. Your child may need to eat foods that have extra calories, fat, vitamins, or calcium. Ask your child's PHP if your child needs to be on a special diet.

Do not smoke around your child:

If you smoke, it is never too late to quit. Smoke can make your child's coughing or breathing worse. Ask your PHP for information if you need help quitting.

Tips to help your child breathe more easily:

  • Elevate your child's head when he sleeps. Your child may have trouble breathing when he lies flat. Use pillows or foam wedges to elevate your head. This may make it easier for him to breathe. Do not use pillows with a baby.

  • Use a cool mist humidifier to increase air moisture in your home. This may make it easier for your child to breathe and to cough up mucus.

Prevent the spread of germs:

  • Wash your hands and your child's hands often. Use soap and water. Carry germ-killing gel with you when there is no soap and water. Teach your child to avoid touching his eyes, nose, or mouth unless he has washed his hands first.

  • Cover your child's mouth when he coughs. Teach him to cough into a tissue or his shirt to prevent the spread of germs.

Take your child to get the flu vaccine each year:

This will help prevent infection from the flu virus. Keep your child away from people who have a cold or the flu.

Contact your child's PHP or CF specialist if:

  • Your child has a fever.

  • Your child has chills or feels weak or achy.

  • Your child has trouble sleeping.

  • Your child urinates less, has a dry mouth or cracked lips, or feels dizzy.

  • You have questions or concerns about your child's condition or care.

Seek care immediately or call 911 if:

  • Your child coughs up blood.

  • Your child has trouble breathing.

  • Your child's lips or fingernails turn blue or white.

  • Your child has severe abdominal pain.

© 2013 Truven Health Analytics Inc. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes. All illustrations and images included in CareNotes® are the copyrighted property of A.D.A.M., Inc. or Truven Health Analytics.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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