Parent and Guardian Guidance

Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.

Diagnosis

The first step in treating cystic fibrosis is confirming a diagnosis. If you or your doctor suspects your child may have CF, a sweat test will likely be ordered. A sweat test is the most reliable way to diagnose cystic fibrosis.

This simple, painless test measures the concentration of salt in a person's sweat. A high salt level indicates CF. It is important to have a sweat test done at a Cystic Fibrosis Foundation-accredited care center, where strict guidelines help ensure accurate results.

Watch the video to hear CF clinicians discuss:

  • What CF is and common CF symptoms
  • Information about the sweat test
  • How a sweat test is done

Learn more about sweat tests and how doctors diagnose cystic fibrosis here.

If your child is diagnosed with cystic fibrosis, you likely have lots of questions. Can my child live a normal life? How can I help my child get the best possible care? What will my child need to stay healthy? Although it may take you and your family time to adjust to the news that your child has CF, it helps to know that you are not alone.

Learn more about CF -- from diagnosis to living with the disease as an adult -- in "An Introduction to Cystic Fibrosis: For Patients and Their Families," or watch the video series.

Hear Preston Campbell, M.D., our current president and chief executive officer, talk about:

  • What it means for your newborn to be positively diagnosed with CF
  • Common questions and concerns
  • Hope for the future of the disease

Fighting CF is a team effort. Every day, people with CF and their families, health care professionals, researchers, donors, and volunteers work together to advance the search for a cure and improve the quality of life for those with CF.

Watch a brief video on how clinical research has made a difference in the lives of people with CF.

We know that a positive CF diagnosis can be scary, but take action by getting involved in your local CF Foundation chapter.

Your Care Team

The best place to receive comprehensive cystic fibrosis care is at one of the more than 120 Cystic Fibrosis Foundation-accredited care centers nationwide, which specialize in treating CF.

Because CF is a complex disease, caring for someone with the disease requires a team approach. At the center of that team is you, your child, and your family. Guiding you every step of the way and providing specialized, comprehensive care are experts and specialists, including CF nurses and doctors, dietitians, social workers, psychologists, and respiratory therapists who are all trained in treating infants and children with CF. 

Watch the webcast below featuring Peter Moygazel, M.D., Ph.D., to learn more about the pediatric CF care team, including:

  • The importance of partnering with your child's CF care team
  • An overview of the members of the pediatric team and the roles they play
  • How you can be a full member of the CF care team to help your child with CF thrive

Partnering for Care: Help Your Child's CF Center Help Your Child Thrive | Webcast 

You and your child can expect to have regular visits with this care team for checkups and check-ins multiple times a year. Members of your CF care team will test your child's lung function, prescribe necessary medications and treatments and work closely with you to help you manage your child's disease.

Learn more about your child's CF care team.

Listen to CF clinicians discuss:

  • When to visit a care center or pediatrician
  • What each member of the multidisciplinary care team does
  • What happens at a clinic visit

How CF Is Treated

Treating a complex disease like cystic fibrosis requires therapies that address problems in different parts of the body, especially the lungs and the digestive system.

Cystic Fibrosis Foundation-accredited care centers work closely with people with CF and their families to create individualized treatment plans.

Each day, most people with CF typically do some form of airway clearance to help loosen and get rid of the thick mucus that can build up in the lungs. Many people with CF use an inflatable vest that vibrates the chest at a high frequency to help loosen and thin mucus.

Most people also take inhaled medicines -- liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer. These medicines include antibiotics to fight lung infections and therapies to help keep the airways clear.

Watch parents of children with CF and a respiratory therapist talk about:

  • What airway clearance is and why it's important
  • Managing lung health
  • The different techniques used for airway clearance 

People with CF typically take pancreatic enzyme supplement capsules with every meal and most snacks to improve absorption of vital nutrients.

Recently approved drugs for CF include ivacaftor (Kalydeco®) and lumacaftor/ivacaftor (Orkambi®), which treat the underlying cause of CF in a small number of people with specific mutations of the CF gene. All other CF therapies available today treat the symptoms of CF.

Work is ongoing to find additional CF therapies that could help improve key symptoms of the disease by targeting the disease at its root.

Learn more about treatments and therapies for CF.

Germs and Staying Healthy

In addition to daily treatments and regular visits with your care team, caring for someone with cystic fibrosis means being “germ smart.” For people with CF, some germs can cause serious lung problems, including lung infections. That's because thick, sticky mucus builds up in their lungs, allowing germs to thrive and multiply.

Germs are all around us, but there are steps you and your family can take to avoid germs and help keep your child healthy. Basic ways to help your child avoid germs include teaching them to:

  • Clean their hands
  • Cover their cough
  • Clean and disinfect their nebulizer
  • Not share personal items
  • Avoid frequent contact with dirt

Listen to four families discuss:

  • Sending their children with CF to day care for the first time 
  • Germs and infection prevention
  • Educating day care staff

Learn more about germs and bacteria that are especially dangerous for people with CF and what you can do to be germ smart.

Listen to CF clinicians, parents, and people with CF discuss:

  • How to prevent germs
  • Ways to keep children with CF as healthy as possible
  • The importance of incorporating fitness and nutrition into everyday life

Nutrition

Proper nutrition -- including a high-fat, high-calorie diet rich in vitamins and minerals -- is vital for people with cystic fibrosis, especially children. Thick mucus often gets in the way of proper digestion and the disease can rob children of the nutrients they need to grow.

To help compensate, almost everyone with cystic fibrosis needs to take pancreatic enzyme supplements with meals and snacks. Taken by mouth, the enzymes go to work in the intestines to help digest food so it can be absorbed by the body. If enzymes and proper nutrition alone aren't enough, a feeding tube may be required.

Watch parents of children with CF and a dietitian talk about:

  • Proper nutrition
  • GI issues
  • Their own tips for giving enzymes to infants with CF 
Learn more about how proper nutrition can help treat CF.

Navigating Insurance

Today's insurance landscape can be hard to navigate, but we are dedicated to helping you get the coverage you and your family need.

  • Find, evaluate, and compare different health insurance options
  • Answer questions about your current health insurance plan
  • Identify programs to help pay for costs
  • Find a healthcare provider in your area

Learn more about navigating insurance.

Parenting a Child With CF: What to Expect

Most people with cystic fibrosis live a normal daily life, with the challenge of incorporating daily medications, airway clearance techniques, and other treatments and medications. Children with CF grow up, go to school, have friends, have hobbies, and can exercise and play sports. Many go to college. Many marry and have families.

In addition to managing your child's treatment and care, it helps to understand what to expect as your child grows.

Watch parents of children with CF and their kids discuss:

  • Their own tips for parenting a child with CF
  • Incorporating CF into daily family life
  • Finding a balance between CF and healthy childhood development

Caring for Your Infant

As the parent of an infant with CF, you may have many questions and may be feeling a range of emotions. In addition to comprehensive care and medical support, the Cystic Fibrosis Foundation offers the "Pathways to Lifelong Health" video series for parents of babies recently diagnosed with CF. This series includes perspectives from both CF care team members and CF parents and covers topics including diagnosis, nutrition, airway clearance, balancing daily life, and CF care and support.

Watch the video series here.

Learn more about recommended clinical care guidelines for newborns to 5-year-olds, including a schedule to guide care teams.

Working With Your Child's School

Caring for and treating cystic fibrosis doesn't just happen at home. It happens every day, everywhere your child goes -- including day care and school.

Letting a day care or school know your child has CF is a personal decision. You do not have to disclose this information, but enlisting the help of educators can make it easier for your child to achieve their academic goals while maintaining their health.

We offer a number of resources for parents of children with CF who are starting school, including information about how to educate teachers about the disease, a letter template for informing a school that your child has CF, what to do when there is more than one child at school with CF, and more.

Watch families, a school health coordinator, a care provider, and a social worker talk about:

  • Partnering with the school staff to manage your child's daily CF care
  • Accommodating the specific needs of students with CF
  • Avoiding germs and infection prevention

Learn more about working with your child's school.

Talking to Your Child About CF

A child's first questions about CF often come after starting school. He or she sees that other children do not take enzymes or do daily airway clearance. They may be asked questions about CF by other children, adults, or teachers.

The goal of telling your child about CF is to help your child know what CF means and why eating right, taking enzymes and other medicines, and doing airway clearance is important. Another goal is to get your child ready to do his or her own care. Children should be taught about CF as soon as they can understand. What you say to your child depends on his or her age, personality, and ability to understand. If you have questions, ask your CF care team for help.

Watch the families of children with CF discuss:

  • The importance of being open and honest about their child's CF
  • Fostering healthy growth and development
  • Their own tips for addressing common questions and concerns

To learn more about how people with CF can go on to lead full, productive lives, watch an adult with CF discuss:

  • Going to college and pursuing a career
  • Getting married
  • Managing her disease to accomplish her goals

Coping While Caring for Someone With CF

Caring for anyone with a long-term disease -- especially if that person is your child -- is stressful. Parents of children with cystic fibrosis are more likely to experience anxiety, depression, or both compared to parents in general. Parents of a child with CF can focus so much on caring for their child that they do not notice when they are beginning to have problems themselves.

But you are not alone. If you recognize signs of stress, talk to your child's care team and your primary care provider so they can work with you on ways to reduce it. This way, you can avoid developing more serious depression and anxiety.

Learn more about coping while caring for someone with CF.

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Reference to any specific product, process, or service does not necessarily constitute or imply its endorsement, recommendation, or favoring by the Cystic Fibrosis Foundation. The appearance of external hyperlinks does not constitute endorsement by the Cystic Fibrosis Foundation of the linked websites, or information, products, or services contained therein.

Information contained on this site does not cover all possible uses, actions, precautions, side effects, or interactions. This site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

FDA-approved drug information is available at dailymed.nlm.nih.gov/dailymed.