Children with cystic fibrosis face special challenges, and so do their parents. As a parent, it’s important for you to know what’s ahead. You and your child with CF can work together to help them grow and learn healthy habits for the future.
Whether your child was just diagnosed with CF or if you’ve been at this a while, there is always more for you to learn about helping your child live a satisfying, active life.
“My Child Was Just Diagnosed with Cystic Fibrosis”
When you first learn that your child has CF, it can be a shock. We at IV Solutions are on your side and are here to help. As you move forward, there will be a lot to take in. Ask questions and learn everything you need to know to care for your child. Because you are with your child every day, you are the most important member of their care team.
Children are usually diagnosed with CF as infants. You will probably be matched with a care team at a specialized cystic fibrosis treatment facility. Your care team will develop a plan tailor-made for your child. By being an active participant in these decisions, you can make sure your child gets the best care possible.
With infants and toddlers, you will focus on getting them what they need to grow and thrive. Starting when they are very young, you will also help them learn the importance of making healthy choices. It isn’t easy, but sticking with it is one way you can show your love for your child.
A Glance at a Day-to-Day routine for CF Patients
A child with CF can go to school, play sports, and sleep over at a friend’s house. They’ll still have a childhood, but they will be working every day to manage their CF symptoms and stay healthy. Part of your job will be helping them to eat a healthy diet, exercise, and keep up with their treatment. Every child will have different needs, so be sure to talk with your doctor.
Cystic Fibrosis Diet
Most children with CF have exocrine pancreatic insufficiency (EPI), which makes it hard for the body to absorb the nutrients it needs from food. You’ll need to work with your doctor or nutritionist to make a diet plan to help your child grow and stay at a healthy weight.
Your doctor might help you find ways to add calories to your baby’s breastmilk or formula, and there will be supplements to provide your child with enough vitamins and minerals. Babies with CF will often start on solid foods early to help them get the nutrition they need to grow.As children grow, it is up to the parent to help them develop good eating habits. People with CF usually need about twice as many calories a day to stay healthy, so you’ll have to focus on nutritious, calorie-rich foods. Supplements will help, but they can’t take the place of healthy meals and snacks. Add calories and nutrients to food with toppings like cheese and chocolate, and throw in fruits and vegetables for healthy antioxidants.
There are things your child will need that you might not expect. An easy way to boost calories is extra fat, so adding butter or Medium-chain triglycerides (MCT) oil to food will make it healthier for a child with CF. Children with CF lose a lot of salt in their sweat, so they need much more salt in their diet than usual. Salty snacks are important to keep on hand, as is water to help them stay hydrated.
At some point, your child will need to start taking enzyme capsules with every meal and snack. These capsules contain the chemicals the body needs to digest food. If your child doesn’t want to take the capsules, you can pop them open and add the contents to applesauce or other treat. Just be sure that your child doesn’t chew the enzyme pellets, or the medicine won’t work like it’s supposed to.
Providing meals and snacks for your child takes time, but the benefit is real. Planning ahead makes it easier. Know what you’ll need the night or morning before, so that you can give your child everything they need during the day. Children benefit from a schedule, and kids with CF are no different. Developing a strong routine for eating will help your child stay healthy both now and as an adult.
Cystic Fibrosis Exercise
One of the best ways to help keep your child healthy is to keep them active. Exercise strengthens the body and maintains lung function. The earlier you teach your child to live an active lifestyle, the easier it will be for them to continue those good habits.
Fitting physical activity into the day helps children to stay active and learn the benefits of exercising. Explore a wide variety of activities with your child to find what they like. Running and biking are good examples of activities children can carry with them into adulthood.
As kids get older, sports are a great way to exercise. Make sure that it’s a good fit and the coach understands your child’s needs. Playing for the sake of fun will probably benefit a child with CF more than heavy competition. There are also exercise groups or classes to take part in at many gyms, like treadmills or exercise bikes.
Because every child will have different risks when it comes to exercise, speak with your doctor about which activities will be appropriate. This way, you and your child can find ways to stay active and healthy that will benefit them throughout their life.
CF Treatment for Children
You’ll be in charge of your child’s treatment when they are young. There is a lot to remember, so it’s important to stay organized and keep track of everything. Your doctor and care team will help you know the best way to care for your child and keep them healthy on a day-to-day basis.
Plan out your child’s day to stay on top of their treatment. They’ll have daily medications and nutritional supplements. The enzyme capsules we mentioned earlier are an important part of eating and digesting food. There are portable nebulizers so you can give your child breathing treatments on the go, and you’ll learn how to give other treatments like High-frequency Chest Wall Oscillation and Postural drainage and percussion (PD&P).
It’s important to remember that part of your job is to teach your child to do their treatments for themselves. Toddlers can start by helping you turn on nebulizers and older children can learn to keep track of their pills and treatment schedule. The earlier you help your child take ownership of their own care, the easier it will be for them as they grow up.
Positive Mindset and Modeling
Children look up to their parents as an example. That’s why it’s so important for parents to keep a positive attitude about the treatment for their children’s CF. If you stay focused on the benefits of eating right or sticking to a breathing treatment schedule, so will your child. This an opportunity for your entire family to eat healthy and exercise together.
If you treat your child as a person that happens to have CF, it will help them to feel the same way. As a parent, you define what is normal for your child. Creating a positive environment and routine shows your child how to be happy with their situation.
Being a caregiver can be exhausting, and there will be times you’ll need encouragement to stay motivated. This is why building a support system for yourself is so important, so you will have people you can talk to when you’re struggling. One source of support are internet forums. An online place for parents of children with CF is the Families section of the Cystic Fibrosis Forums.
Healthy Habits for a Healthier Life
It’s on the parent to keep things organized for their children’s treatment. By helping kids to stick to a schedule and follow through on treatments, they develop habits to keep healthy. One of your goals as a parent is to encourage your kids to live healthy lives now and when they’re adults. Teaching your children the importance of good choices will help them stay healthy as they learn to care for themselves.
Looking for hints on helping your child take their medication or do their treatments? Click here to learn 10 ways to encourage your kids to take their CF medication.
Cystic fibrosis in Babies. BabyCenter. Accessed March 20, 2015.
Staying Healthy. Cystic Fibrosis Foundation. Accessed March 20, 2015.
Cystic Fibrosis and Dietary Needs According to Age. CFChef. December 3, 2014. Accessed March 20, 2015.
Cerny F. Day-to-Day: Exercise and Cystic Fibrosis (CF). Cystic Fibrosis Foundation. 2009. Accessed March 20, 2015.
Videos. CF Living. Accessed March 20, 2015.
What Is the Next Step if my Baby has CF? Cystic Fibrosis Foundation. January 31, 2014. Accessed March 20, 2015.