Cystic Fibrosis In Children

WHAT YOU SHOULD KNOW:

• Cystic fibrosis, also called CF, is a condition where your child's exocrine glands do not work normally. Exocrine glands make fluids such as sweat, mucus, tears, saliva (spit) and chemicals that break down food in the bowel. With CF, the fluids made are too thick and sticky, and can clog up ducts inside body organs. It is caused by an abnormal gene that affects the normal functions of the body. Your child will have received one of these abnormal genes from each of his parents. Signs and symptoms of CF include frequent cough, wheezing, and shortness of breath that gets worse over time. He may get frequent respiratory infections. Your child may not gain weight or may lose weight, feel very weak, and have problems with absorbing food. He may lose a lot of chloride (salt) through sweating, which may cause weakness.
  
  
• To diagnose CF, your child may need newborn screening or other blood tests, chest x-ray, and a sweat chloride test. He may be given medicines to help him breathe easier and kill germs causing any infection. He may need breathing exercises and special devices to help remove mucus and let him breathe easier. Your child may need medicines to help break down food and absorb nutrients properly. He may be given a special diet and vitamins to help him gain weight and energy. Your child may need surgery to repair or completely replace damaged organs, such as his lungs or liver. Diagnosing and treating your child's CF as soon as possible may help relieve problems with digestion and trouble breathing.

INSTRUCTIONS:

Ask for information about where and when to go for follow-up visits:

For continuing care, treatments, or home services, ask for more information.

• You and your child need to attend his follow-up visits always and on time. His caregiver will check his condition each time you visit and may give other therapies. It is also very important to follow your caregiver's instructions regarding your child's medicines and breathing therapies.
  
  

Avoid germs:

• Wash your hands and your child's hands often. This will help prevent the spread of germs. Encourage everyone in your house to wash their hands with soap and water after going to the bathroom. Also wash hands after changing diapers and before preparing or eating food.
  
  
• Try to avoid people who have a cold or the flu. If your child is sick, keep him away from others as much as possible.

Diet:

• Having CF can affect how your child's body absorbs food and nutrients. He may need extra calories, vitamins, or calcium added to his diet. Your child may need to take pancreatic enzymes to help him better absorb your food. Ask your caregiver for more information about these.
  
  

Exercises:

• Airway clearance techniques: Thick mucus in your child's lungs caused by CF can lead to infections and lung damage. Your child's caregiver may teach you and your child special exercises to help remove mucus and let him breathe easier. These exercises may be used along with machines or special devices to help decrease your child's symptoms. Ask your caregivers for more information about these exercises.
  
  
• Physical exercise program: You, your child, and his caregiver can plan a suitable exercise program for him. Doing exercise and other physical activities can get back your child's energy and improve his appearance. Exercising also makes the heart stronger and keeps your child healthy. Physical activities can also help loosen secretions in your child's airways and lungs, and help him breathe easier.

Medicines:

• Keep a current list of your child's medicines: Include the amounts, and when, how, and why they are taken. Bring the list and 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. Give vitamins, herbs, or food supplements only as directed.
  
  
• Give your child's medicine as directed: Call your child's primary healthcare provider if you think the medicine is not working as expected. Tell him if your child is allergic to any medicine. Ask before you change or stop giving your child his medicines.
  
  
• Antibiotics: This medicine is given to fight or prevent an infection caused by bacteria. Always make sure you give your child antibiotics exactly as ordered by his caregiver. Keep giving this medicine until it is completely gone, even if your child seems better. Stopping antibiotics without his caregiver's OK may make the medicine unable to kill all of the germs. Never save antibiotics or take leftover antibiotics that were given for another illness.
  
  
• Anti-inflammatory medicine: Your child may need to take ibuprofen or steroids to decrease inflammation (swelling) in his lungs. These medicines can have bad side effects. Ask your child's caregivers for more information about these medicines.
  
  
• Respiratory medicines: Your child may need medicines to help him breathe more easily, such as bronchodilators. These are medicines that make the airways in your child's lungs wider. He may also need medicines to help thin the mucus in his lungs.

Tips to help your child breathe easier:

• Avoid smoke: Do not smoke, or let anyone smoke around your child. Smoke can make coughing or breathing worse.
  
  
• Humidity: Using a humidifier will moisten the air in your home. The moist air will make it easier for your child to cough up sputum. Wash the humidifier each day with soap and warm water to keep it germ free.
  
  
• Positioning: Prop pillows behind your child's head and chest when he is resting or sleeping so he does not lie flat. (Do not use pillows with a baby).

CONTACT A CAREGIVER IF:

• Your child has a fever.
  
  
• Your child's skin is itchy, he has a rash, or he has other new signs or symptoms.
  
  
• 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 about your child's medicines.
  
  
• You have any questions or concerns about your child's condition, treatment, or care.

SEEK CARE IMMEDIATELY IF:

• Your child coughs up blood.
  
  
• Your child has pain in his abdomen that does not go away.
  
  
• Your child has trouble breathing.
  
  
• Your child's lips or fingernails are turning blue or white.

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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.

Learn more about Cystic Fibrosis In Children (Aftercare Instructions)