Cystic Fibrosis in Children: Care Instructions

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Your Care Instructions

Cystic fibrosis is a lifelong illness that causes mucus to become thick and sticky. Mucus is the slippery substance inside the nose, throat, sinuses, and airways. With this condition, the mucus builds up and clogs passages in the body. The mucus can lead to serious breathing problems and lung disease. When it affects the pancreas, it can lead to malnutrition, diabetes, and problems with a child's growth and development. It also can lead to severe constipation and bowel blockage. The illness cannot be cured, but it can be treated.

Finding out that your child has cystic fibrosis is very upsetting. You may be worried about your child's future, because the disease does shorten a person's life. But the life span is increasing for people with this disease. On average, people who have cystic fibrosis live into their mid-to-late 30s, although new treatments are making it possible for some people to live even longer. People who have mild disease may have a normal life span.

You also may be worried about how to care for your child. It is normal to feel overwhelmed by how hard it is to take care of a child with cystic fibrosis. However, you can learn to do all that your child needs. You also need to take care of yourself. Get plenty of rest, eat good food, and exercise.

Follow-up care is a key part of your child’s treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if your child is having problems. It’s also a good idea to know your child’s test results and keep a list of the medicines your child takes.

How can you care for your child at home?

  • Give your child a varied diet that is high in calories. People with cystic fibrosis who take enzymes to help them digest food can eat many of the same foods as anyone else. However, they usually need more calories each day than people who do not have the disease. A high-calorie diet will help your child gain and keep weight and have energy. A dietitian can help you plan meals.
  • Encourage your child to exercise. It helps loosen mucus and improves oxygen flow, which can make your child feel better. Upper body exercises, such as swimming or rowing, increase the strength and endurance of the muscles that are used for breathing. Talk to your child's doctor about how much and what kinds of exercise will be good for your child.
  • Give your child lots of fluids. People who have cystic fibrosis can have a hard time replacing salt or water in their bodies. They need to drink extra fluids and eat salty foods to help replace the water and salt they lose through sweating.
  • Add salt to your child's food, especially during hot weather, to replace the salt lost through sweating.
  • Follow your doctor's directions for moving your child's body in different positions to help drain fluid. This is called postural drainage, and it helps to ease breathing and prevent infections. You also will do chest percussion. This is strong clapping of the chest with a cupped hand to vibrate the airways in the lungs. The vibration helps your child cough up mucus. You may see a respiratory therapist to learn how to do postural drainage and chest percussion.
  • Make sure your child gets all the recommended childhood vaccines, as well as the pneumococcal vaccine.
  • Keep your child away from smoke. Do not smoke or let anyone else smoke around your child or in your house.

Handling the challenges of cystic fibrosis

You and your child will struggle at times with this illness. But having a good attitude and lots of support will help you and your child cope.

  • Focus on your child's strengths. Let your child know that you love and believe in him or her.
  • Do the best you can and know that you cannot control everything.
  • Give your child some responsibility for his or her care. Children who have a say in their treatment often stay healthier.
  • Deal with problems. Children who have cystic fibrosis may find it harder to cope with social, emotional, and educational problems. Help your child work through these problems by showing him or her how to face them with a good attitude.
  • Learn about the disease. This will help you figure out what you can do to help your child. Often the biggest problem for a parent is fear of the unknown.
  • Consider joining a support group. Sharing your experiences with other parents who face similar challenges may help you feel less overwhelmed. Seek counseling if you need help sorting out your emotions.

When should you call for help?

Call 911 anytime you think your child may need emergency care. For example, call if:

  • Your child has severe trouble breathing. Signs may include the chest sinking in, using belly muscles to breathe, or nostrils flaring while your child is struggling to breathe.

Call your doctor or nurse call line now or seek immediate medical care if:

  • Your child's cough is worse.
  • Your child has wheezing that is new or that gets worse.
  • Your child has a fever.
  • Your child has severe belly pain or vomiting.

Watch closely for changes in your child's health, and be sure to contact your doctor or nurse call line if:

  • Your child has more trouble breathing than usual.
  • Your child has lost weight or is not gaining weight.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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