If Your Child Has Cystic Fibrosis

If you have a child with cystic fibrosis (CF), you probably have lots of questions. You want to know how to keep her from getting sick, whether she’ll need to follow a special diet, or if she can play like other kids. As your child goes through new stages, you’ll probably have more questions.

The good news is, you child can live a mostly normal day-to-day life. Children with CF go to school and can play sports just like other kids. Many of them go to college, get jobs, marry, and have families.

Your child’s CF care team is there to support you and your child. That team includes your child’s doctor, nurse, dietitian, and social worker. It might also include a physical therapist, psychologist, or pharmacist. Cystic fibrosis is a complex disease. Taking care of a child with CF may feel stressful at times. You can turn to the members of your child’s CF care team whenever you have questions, feel overwhelmed, or need some help.

How Can I Help Keep Her From Getting Sick?

Kids with CF have a higher risk of getting sick than other kids. This condition causes a buildup of thick, sticky mucus in the lungs that allows germs to grow and multiply. When that happens, your child can get a lung infection. These can be very serious for people with CF. Here are some important tips for fighting germs:

What Foods Should My Child Eat?

She can eat the types of foods that other kids can eat, though there are a few things she’ll need to add to her diet. These include:

More fat and calories. Children with CF need about 2,000 to 2,800 calories per day --that’s more than most kids eat. One way to help your child take in more fat and calories is to offer whole milk at every meal. You can also add whole-milk dairy products to the foods she eats. For example:

  • Use cream on cereal
  • Add butter to most meals
  • Put extra cheese in casseroles and other foods

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Vitamins. CF affects the body’s ability to absorb vitamins. Kids who have it need to take vitamin supplements to make sure they get enough. Work with your child’s CF care team to find the right vitamins, supplements, and doses for your child.

Enzymes. Your child will probably have to take these before she eats. CF causes the pancreas to make a thick mucus. This blocks enzymes the pancreas releases that normally aid digestion. Your child’s care team will help you find the enzymes she needs and the doses she should take. You can open the enzyme capsules and mix them into foods like applesauce. You should always do it right before your child eats, not ahead of time.

Can My Child Play Sports?

She may feel tired easily or often be short of breath, but yes. Most people with CF can do any type of activity they want. Many can actually benefit from it. Exercise helps loosen mucus in the lungs. It strengthens the muscles that help your child breathe. It can also boost her confidence and self-esteem. Don’t be alarmed if your child coughs a lot during exercise -- it helps to clear the lungs.

Be sure to speak with your child’s CF care team before she starts any type of exercise. Talk to your child’s PE teacher, too. You can have someone on your child’s CF care team, like a physical therapist, be present, too. Help her PE teacher understand what CF is and how it may affect her during physical activity. If your child’s CF care team clears her for exercise, make sure she follows these safety measures:

Stay hydrated. People with CF lose more salt when they sweat. If your child loses too much salt, she can become dehydrated. Encourage her to drink 6 to 12 ounces of fluid every 20 to 30 minutes. Sports drinks are a good idea because they have carbohydrates and salt.

Avoid germs. Contact sports and indoor activities can expose your child to lots of germs that can make her sick. Let her know it’s important to wash her hands or use an alcohol-based hand gel after using any shared equipment. She should also stay away from anyone who’s sick.

WebMD Medical Reference Reviewed by Amita Shroff, MD on April 01, 2019

Sources

SOURCES:

Cystic Fibrosis Foundation: “Parent and Guardian Guidance,” “Your CF Care Team,” “Germs and Staying Healthy,” “A Teacher’s Guide to CF,” “Nutrition for Your 3 to 7 Year Old With CF,” “Enzymes,” “Fitness at School,” “An Introduction to CF.”

National Heart, Lung, and Blood Institute: “Cystic Fibrosis.”

Mayo Clinic: “Cystic Fibrosis.”

KidsHealth: “Cystic Fibrosis.”

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