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Cystic Fibrosis in Children: Care Instructions

Overview

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.

Treatments can include lung therapy, medicines, exercise, and diet changes. Some people who have this condition need to take enzymes and vitamins. There isn't a cure for cystic fibrosis. But early diagnosis and new treatments are helping people live longer.

You may be worried about how to care for your child. It is normal to feel overwhelmed. But your child's care team will help you learn to do all that your child needs.

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 foods that meet your child's special nutritional needs. A dietitian can help you plan meals.
  • Encourage your child to exercise. It can make your child feel better. Talk to your child's doctor about how your child can be active.
  • Encourage your child to drink lots of fluids. People who have CF need extra fluids. Ask your doctor how much fluid your child needs.
  • Follow your doctor's directions to keep your child's airway clear.
  • 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 CF

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 them.
  • Give your child some responsibility for their own care. Children who have a say in their treatment often stay healthier.
  • Learn about the disease. This will help you figure out what you can do to help your child.
  • Do the best you can and know that you cannot control everything.

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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Care instructions adapted under license by your healthcare professional. If you have questions about a medical condition or this instruction, always ask your healthcare professional. Healthwise, Incorporated disclaims any warranty or liability for your use of this information.