If you have a child with cystic fibrosis (CF), you probably have lots of questions. You want to know how to keep them from getting sick, whether they’ll need to follow a special diet, or if they 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 Them 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?
They can eat the types of foods that other kids can eat, though there are a few things they’ll need to add to their 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 they eat. For example:
- Use cream on cereal
- Add butter to most meals
- Put extra cheese in casseroles and other foods
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 they eat. 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 they need and the doses they 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?
They 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 their 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 they start 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 their PE teacher understand what CF is and how it may affect them during physical activity. If your child’s CF care team clears them for exercise, make sure they follow these safety measures:
Stay hydrated. People with CF lose more salt when they sweat. If your child loses too much salt, they can become dehydrated. Encourage them 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 them sick. Let them know it’s important to wash their hands or use an alcohol-based hand gel after using any shared equipment. They should also stay away from anyone who’s sick.