If your child has been diagnosed with cystic fibrosis (CF), learning about their condition may help you manage their symptoms and reduce their risk of complications. It can also help you set realistic expectations and prepare for the challenges ahead of you.
This list of questions can help you prepare for talking with your child’s doctor and healthcare team.
CF is a complex condition that can affect your child’s life in many ways. To help meet their needs, their doctor will likely assemble a multidisciplinary care team. This team might include a respiratory therapist, dietitian, and other allied health professionals.
Consider asking your child’s doctor these questions:
- Which healthcare professionals should my child see?
- What role will each member of their care team play?
- Where can we attend appointments with them?
- How often should we schedule appointments?
- Are there other community support services that we can access?
You may also want to find out if there is a cystic fibrosis center in your area. If you have questions about the cost of services or your health insurance coverage, speak with a member of your child’s care team and with your insurance company.
Currently, there is no cure for CF. But there are therapies available to manage your child’s symptoms.
For example, your child’s care team might:
- prescribe medications and supplements
- teach you how to perform airway clearance techniques
- recommend changes to your child’s diet or other daily habits
Tell your child’s care team about any symptoms they develop and ask them:
- What treatments can we try?
- How effective are these treatments?
- What should we do if they don’t work?
Your child’s care team can you help you understand each element of their treatment plan.
Doctors on your child’s care team might prescribe a mucus thinner, CFTR modulator, or other medications to help manage their CF and potential complications.
Here are a few questions about any medication your child is prescribed:
- What dose should my child take?
- How often, and at what time of day, should they take it?
- Should they take it with food or on an empty stomach?
- What are the potential side effects and other risks of this medication?
- Can this medication interact with other drugs, supplements, or foods?
If you suspect that your child’s medication isn’t working or is causing side effects, contact their doctor.
Airway clearance techniques (ACTs) are strategies that you can use to clear mucus from your child’s airways. They might involve shaking or clapping on your child’s chest, coughing or huffing, diaphragmatic breathing, or other techniques.
Consider asking your child’s care team:
- What types of airway clearance techniques should my child use?
- Can you demonstrate the proper way to perform these techniques?
- How often and when should we perform these techniques?
If you find it difficult to perform airway clearance techniques, let your child’s care team know. They might be able to tailor the techniques or offer tips to meet your needs.
To thrive with CF, your child needs more calories than most kids. Their condition also puts them at risk of certain digestive problems. For example, CF can cause mucus to build up in their pancreas and block the release of digestive enzymes.
To help your child meet their nutritional and digestive needs, their care team might recommend a special diet. They might also prescribe a pancreatic enzyme supplement, nutritional supplements, or medications to manage digestive complications.
Questions related to nutrition that you might want to ask the care team:
- How many calories and nutrients does my child need each day?
- Should my child take supplements or medications?
- What other strategies can we use to meet their nutritional and digestive needs?
If you’re having trouble meeting your child’s nutritional needs, consider making an appointment with a dietitian. They can help you develop strategies to keep your child well-nourished.
CF can cause put your child at risk of a variety of complications, including lung infections. To lower their risk of complications, it’s important for them to follow their treatment plan and practice healthy habits.
To learn more, consider asking their care team:
- What habits should my child practice to stay healthy?
- What steps can we take to protect them from lung infections?
- What are some other complications that they might experience?
- How will we know if my child is experiencing complications?
- If they develop complications, what are the treatment options?
If you suspect that your child has developed a lung infection or other complication, contact their care team right away.
According to the latest data from the Cystic Fibrosis Foundation, the average life expectancy for babies born with CF between 2012 and 2016 is 43 years. Some people with CF lead longer lives, while others lead shorter lives. Your child’s outlook depends on their specific condition and the treatment they receive. Keep in mind that the average life expectancy for CF has increased over the years as new treatments and therapies have become available.
To develop realistic expectations and prepare for the road ahead, consider asking their care team:
- What’s my child’s long-term outlook with CF?
- How do you expect their condition might change in the future?
- What treatments do you expect they might need in the future?
- What steps can we take to help my child lead a long and healthy life?
It’s possible that your child might need a lung transplant one day. This procedure can take a lot of preparation — so it’s a good idea to talk to your child’s care team about it before your child may need it.
CF can take a toll on your child’s physical and mental health, as well as your own. But it’s possible to live a happy and fulfilling life with CF, especially when you have adequate social and emotional support.
Here are a few questions to ask your child’s care team if you want to access sources of support in your area:
- Are there any in-person or online support groups for people with CF and their loved ones?
- Do any therapists in the area specialize in treating or supporting people who are coping with CF?
- What steps can we take to relieve stress and maintain good mental health?
If you suspect that you or your child is experiencing symptoms of anxiety or depression, speak with your doctor.
When it comes to managing CF, knowledge is critical. Make the most of the expertise and support offered by your child’s care team by asking questions and requesting resources to help you cope with their condition. The questions in this discussion guide can help kick-start your CF education.