Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
Starting solid foods is very important for the development and health of babies with cystic fibrosis.
Eating new foods adds to the calories babies with CF get in breast milk or formula and helps them get closer to eating the calories needed for good nutrition and growth. Eating solid foods gives babies the chance to practice important skills including moving the tongue, using the gums and swallowing.
Starting a wide range of solid foods over a long time helps babies eat a variety of foods and flavors as they get older. This makes your job easier in the long run.
The American Academy of Pediatrics suggests that solid foods be added when babies are able to hold their head up, keep food in their mouth and sit up with some help. This normally happens when babies are 4 to 6 months. When your baby is ready for the highchair, have him sit at the table. This is a great time to have your baby start eating dinner with the rest of the family.
Babies should get solid food when they show signs of hunger, such as when they are ready for a bottle. It is easier to feed babies solid foods when they are calm. If your baby is too hungry, you may need to give a few ounces of breast milk or formula before offering solids. It is hard to learn a new skill, like eating solid foods, when a baby is really fussy. If your baby needs to gain weight, your CF dietitian may advise you to offer high-calorie formula or breast milk before feeding your baby solid food.
Rice cereal is a common and good first food. It is high in iron, which is important for babies. Strained meats make a good second food to try. They are high in iron and calories. Plain strained meats have more protein than combination foods such as vegetables with meat.
Babies can eat a variety of pureed foods. Slowly adding a variety of strained fruits, vegetables and meats will help achieve a balanced diet and good eating habits. Try one food at a time to make sure that your baby does not develop a rash or have diarrhea. Call your doctor if you think your baby may have a rash or diarrhea because of food.
There are no clear rules about the order in which foods need to be started as long as your baby can swallow safely. Ask your CF dietitian how to get started.
The main goal during the first few weeks of eating solid foods is to allow your baby to practice the new eating skills. These skills are keeping the food in the mouth, working food toward the back of the mouth and swallowing.
Babies need to overcome the reflex (which is out of their control) to push anything other than liquids out of their mouths. Infants as young as 6 months old are able to show interest (or lack of interest) in food and eating. Some actions that show lack of interest:
Because infants love any response from parents, it is very important to remain calm and keep offering foods when your baby does any of the things listed above. Do not say anything to your baby, and try not to get angry when the baby refuses food or spits it out. Even talking about this by saying, “Oh, you don't like your peas” can give your baby the attention that he or she loves. Your baby may be more likely to spit out food in the future to get your attention.
During the first few weeks of learning to eat solids, your baby may eat only a few tablespoons of food at each meal. This is OK. Babies get most of their nutrition and calories from breast milk or infant formula.
When babies make faces when trying a new food, it does not always mean that they do not like the food. It just means that it is new. Give very small amounts of new food. You may have to give a food 8 to 10 times before your baby starts to like it.
Expect messes. Older infants want to feed themselves. At this age, making messes is a part of learning to eat. A baby needs to learn to move food around in his mouth, and grip and pinch with his hands in order to eat on his own. This may include spitting food out, as well as making messy art on the highchair tray.
It is important not to force-feed your baby. This can make mealtimes stressful, and your baby will not be excited to eat. Save your energy and show your excitement (e.g., clapping, smiling) when he or she tries and eats new foods.
Work with your CF dietitian to make a plan. Most babies are born knowing when they are hungry and full. Your baby will not eat more food than other babies at this age, no matter how hard you try.
Here are some daily amounts and suggested serving sizes for all children, including those with CF. You can also offer strained or pureed foods, one teaspoon at a time.
The trick is to look for ways to add more calories in formula and foods without adding more food for your baby to eat. You will work with your CF dietitian and learn how to add calories to food. Here are a few to start:
Babies with CF need vitamin supplements because it is difficult for them to absorb vitamins well. Vitamin supplements help prevent low levels of fat-soluble vitamins A, D, E and K. Your CF dietitian will tell you which type and dosage of vitamin supplements are best.
Your baby may need pancreatic enzyme replacements (enzymes) to help digest and absorb food. Enzymes must be prescribed by your baby's doctor.
Enzymes may be started if your baby has any or all of these symptoms:
Enzymes come as capsules. Each capsule contains many small enzyme beads. For babies, you should open the capsules and sprinkle the beads on a small amount of acidic food such as baby fruit or applesauce that you then feed with a spoon. The beads have a coating that helps them dissolve in the small intestine. This is where most foods are broken down and absorbed into the blood.
Infants with CF who do not digest their food well need enzymes every time they eat. When your baby has breast milk, formula or food, you will need to give enzymes. Put beads in food right before feeding. Do not change the enzyme dose without talking to your CF dietitian or health care provider.
Some very young babies may spit out the beads. If this happens, gently scoop the bead mixture back into the baby's mouth until the entire dose of enzymes has been given. It may take time for your child to learn how to swallow beads because of the new texture. Enzymes do not have a taste.
Hear more tips from other parents like you by watching this video. A dietitian and parents of children with CF discuss how to give enzymes, provide proper nutrition and calories, and look for signs of malabsorption.
People with CF lose a lot of salt in their sweat. The more they sweat, the more salt they lose. In hot weather, your baby may need more salt. Your CF dietitian or health care provider may tell you when and how to add extra salt to your baby's formula or food.
In general, the guidelines are to add:
Use a measuring spoon, not a household spoon, to measure. Do not add more salt than recommended. Salt may be added to formula or to applesauce used to give enzymes.
Tube feedings are formula feedings through a tube into the stomach. Some infants with CF have a very hard time gaining weight. Tube feedings are a great way to help these babies grow and feel better.
Tube feedings are not a last resort. They do not mean failure. Don't forget: Higher body weight seems to be linked to better lung function. Do what is needed to help your baby get to a healthy weight.
Be sure to talk to your CF center dietitian at every visit about your baby's eating. A small amount of spitting up or throwing up is normal, but a large amount of throwing up is not normal. This may mean that your baby has reflux. Reflux can lead to slow weight gain and poor growth.
Your CF dietitian also is a good resource for making decisions about food choices, how to add calories, getting your baby to eat and making mealtime fun. The earlier you ask the better.
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