Caring for Someone With CF

Caring for someone with CF as a parent or caregiver? There are ways to adapt your approach as they move through different stages of their life.

Keep in mind that it’s always a good idea to meet with the professionals at your child’s CF Care Center to develop a care plan that fits your child’s specific needs. Visiting your child’s CF Care Center every 3 months, or 4 times per year, is a crucial part of managing their health.

Here are some age-specific tips to keep top of mind while providing care for your loved one.

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Infants

Finding out about your child’s CF can be overwhelming. You may be concerned about their future as you continue to learn about their condition and how to provide the best care you can. Here are a few things to keep in mind.
 

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Attend your routine appointments. Here are some of the procedures, tests, and scans you can expect during these appointments:

  • Airway clearance techniques. Your care team will help you learn how to perform these techniques very early on—as soon as a week after your child’s diagnosis

  • Respiratory cultures. These are also called sputum or throat cultures performed to look for bacteria. Your care team will perform these once every few months

  • Chest x-rays. Your child should have their chest imaged at some point between 3 months of age and 6 months of age. Once your child reaches 1 year of age, you can have these scans done annually or as needed

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Influenza vaccination. Your child should get the flu vaccine after 6 months of age, then another at least 1 month after that dose. After reaching age 1, he or she should receive the vaccine annually

  • Make sure you, the members of your household, any out-of-home caregivers, and your child all get the annual influenza vaccine
     

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Ask your child’s care team about pancreatic enzyme replacement therapy (PERT) for children under 2 years of age. Not all children need PERT. Your healthcare provider will be able to determine whether your child does 
 

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Know which vitamins and nutrients your child needs. You will most likely need to give your child vitamin A, D, E, and K supplements. Your care team can help you learn how to adjust what you feed your child if they are not gaining enough weight. For instance, you may need to give your child other supplements and high-calorie feedings  
 

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Learn to address your child’s respiratory issues by:

  • Keeping your home smoke-free

  • Learning how to provide airway clearance physical therapy for your child

  • Bringing your child in for the appropriate tests and scans needed to monitor their lung health
     

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Understand how to protect your child against infection. Your care team can help with this

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Your CF Care Center will teach you how to perform airway clearance techniques after your child turns 1.
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CF fiction CF fact

Here's the fact: Your care team will help you perform airway clearance techniques as soon as a week after your child's diagnosis.

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Children Ages 2-5

Continuing to care for your child in these early years brings a new set of challenges and opportunities. Here are some important things to keep in mind along the way:

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Stay up to date with vaccinations. Make sure your child gets routine immunizations, including the first dose of Pneumococcal polysaccharide vaccine (PPSV23). You, all the members of your household, and all caregivers should also receive the annual influenza vaccinations

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Monitor your child’s respiratory health. Check in every few months with your child’s care team to talk about your care plans and treatment goals. Take your child in for regular testing, including:

  • Spirometry tests. These will help your care team check for pulmonary exacerbations and see how your child is responding to treatments. Healthcare providers may start to perform these tests with children at 3 years of age. However, young children may not be able to perform it at this age. Once your child is able to do the test, it is recommended that it be performed at every visit

  • Chest x-rays. These should be done at least every other year

  • Chest computed tomography (CT) scans. You and your care team may decide to have your child get a CT scan every 2 to 3 years, using the lowest dose of radiation possible

  • Throat cultures. These tests are done on younger children because they are not able to cough up enough sputum into a cup to be studied. A throat culture should be done every 3 months to monitor the microorganisms in your child’s airways

 

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Perform airway clearance techniques daily and increase when ill as directed by your care team

When your child experiences a pulmonary exacerbation, you may need to:

  • Perform airway clearance techniques more frequently

  • Give your child oral, inhaled, and/or intravenous (IV) antibiotics

Learn more about pulmonary exacerbations

 

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Check your child’s weight regularly. There are many different ways to make sure your child is maintaining a healthy weight, including:

  • Weight-for-age. Your child should be within the 10th percentile

  • Body mass index (BMI percentile). This can be used to check your child’s weight-for-height. Your child should be within the 50th percentile

  • Calorie intake. Discuss with your care team nutritionist what the appropriate amount of calories, protein, and fat per day is for your loved one

 

If your child is not able to maintain a healthy weight, talk with your healthcare provider right away. There are many ways you can help your child gain weight.

Explore CF with Eugene the gene

Getting your child familiar with CF from an early age is crucial to helping them take control of their care later. This educational comic strip offers a fun and engaging way to learn about the causes and impacts of CF.

 

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Children Ages 6-12

As your child continues to grow and eventually reaches their pre-teen years, they’ll become more aware of their CF and how it affects their life. Here are a few tips to help you navigate the changes you may see during this time.

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Help your child learn what causes CF and the importance of knowing about their disease and their genotype. Take a deeper look

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Begin to teach your child about how CF impacts the body
 

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Encourage your child to participate more actively in their care. You can start by allowing them to take medicines and do vest therapy on their own while you observe

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Help your child learn why it is important to perform airway clearance techniques. Learn how CF affects the lungs 

Explore CF with Eugene the gene

Make CF education fun and engaging for your child. Eugene the gene was created specifically for children who have CF and their caregivers.

 

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Children Ages 13-17

The teenage years are hard enough when you don't have CF; having CF only makes things harder. Here are a few tips to consider as you continue to provide your best care for a loved one on the brink of adulthood.

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Encourage your teen to play an active role during appointments by:

  • Asking and answering questions on their own

  • Knowing the reasons for yearly checkups and tests

  • Learning the right food options from a nutritionist


     
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Begin the steps for transitioning your teen from pediatric to adult care by:

  • Having your teen connect via phone, text, and/or video chat with an adult with CF to help guide them in this transition. The CF care team can help find a person to share their CF experiences and successes with your loved one

  • Encouraging them to take more responsibility—and trusting them to start taking care of their health on their own. For example, they should know the names of their medications, and they should be honest and forthcoming when talking about their symptoms with you and their care team

  • Getting to know the adult center you’re considering. Not all adult centers offer the same exact services, so it’s important to find out what specialists and services are available at this center
     

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Teach your teen to recognize when their symptoms get worse and how a pulmonary exacerbation can lead to lung damage

Learn how pulmonary exacerbations lead to lung damage

 

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Help your teen keep up with their digestive health by:

  • Reminding them to take their digestive enzymes. Most teens need to take enzymes to help them with digestion. If they miss a dose of their enzymes, they may have abdominal pain, constipation, or even a type of acute intestinal blockage called distal intestinal obstruction syndrome (DIOS)

 

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Be on the lookout for diabetes by:

  • Knowing which signs and symptoms to watch out for. Roughly 15% to 20% of teens with CF will develop diabetes, which can cause them to lose calories, weight, and energy. It may also cause a drop in lung function. Your teen may feel drained without knowing why, may feel thirsty all the time, or may have to get up to use the bathroom in the middle of the night. Talk to your care team right away if you or your teen notices any of these symptoms. Even if your teen does not have any of these symptoms, they should be screened once a year for diabetes.

    Learn more about cystic fibrosis-related diabetes (CFRD) here

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Adults

As your loved one reaches adulthood, they might already have a good understanding of their CF. The key is to make sure they are equipped to manage their own care as they become fully independent.

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Communicate with your loved one’s care teams. Talk to your loved one’s pediatric care team and adult care team, and make sure they are both communicating with one another

 

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Prepare your loved one for the transition to adult care. Try to talk to your loved one about how their care will change as they get older—and have these conversations as early as you can

 

responsibility

Give your loved one more responsibility over time. Encourage your loved one to keep learning everything they can about CF, practice self-care, and make decisions about their health. Taking more of an active role in managing CF is just one of the many ways they can become more independent!

 

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Take it slow. Some young adults may be more eager for independence than others. It might be a good idea to accompany your loved one to their first visit at their adult care center  

 

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Make sure your loved one knows:

  • How to fit their treatments into their daily routine

  • What their medications do, the potential side effects, and how to get refills

  • About lung function and how to prevent infections Learn about the impact of CF on the lungs

  • The signs and symptoms of cystic fibrosis-related diabetes (CFRD)  Learn more about CFRD

  • When they need to call the healthcare provider

 

lungs

Encourage your loved one to manage their CF by:

  • Getting sputum cultures every few months

  • Having posterior/anterior and lateral chest X-rays every 2 to 4 years, or as needed (for example, during pulmonary exacerbations)

  • Performing airway clearance and exercising regularly to keep their lungs healthy

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