It can be tough to let your child with cystic fibrosis (CF) just be a kid. It’s normal to want to protect them. But by maintaining a treatment plan, children with CF may be able to do a lot of the same things other kids do. So encourage your child to be a kid—just as much as you encourage them to stick to routines that are good for their health. At the end of the day, it’s important to remember that CF is just one part of your child—it doesn’t define who he or she is.
Helping your child
find a balance
Living with CF doesn’t have to mean missing out on the fun of childhood. Here are some suggestions for finding a balance between treatments and everyday life as a kid.
Making & KEEPING routines
Growing up, most children learn it’s important to do things on a daily basis to stay healthy, like brushing their teeth and eating fruits and vegetables. So for a child with CF, treatments should be another healthy routine—something they do that's good for them. Talk to your child about what CF is, what each treatment is meant to do, and what it means to have CF. It may help motivate your child to stick to treatments if they know the reason for doing them. It can also help your child feel more comfortable with treatment if siblings or family members participate in some way. Here are some examples:
- Plan family activities like playing a board game or coloring together for when your child has to do certain treatments
- Put together a treatment time box with special activities for that time
- Include siblings in treatment time, if possible, to help them feel included
Finding a passion
Kids will want to be kids, so encourage your child to try different things. Consider scouts, art, music, sports, or even them just playing outside with friends—anything that he or she loves to do. Having a hobby may even help build confidence. Just be sure to talk to your child's healthcare provider about what kinds of exercise and activities are appropriate for your child.
TIPS FOR TRAVELING
Taking time to be together as a family is important, and traveling is a great way to reconnect without the distractions of work, school, and other commitments. With some planning, getting away—either on vacation or just taking a day trip—can be doable. Here are a few tips to help you prepare:
- Try to talk with your child's healthcare provider before any trip to discuss whether your travel plans are appropriate for your child
- Set treatment reminders ahead of time to make sure you maintain your child's routine while traveling
- Research medical services in the area before you go
- Consider packing extra medicine, just in case
Caring for yourself
FIND SUPPORT IN OTHERS
Your CF center may be able to direct you to a parent group or CF center–sponsored family night. It can be helpful to have a circle of family and friends you can count on for help and emotional support. Connecting with other parents at your CF center is a good way to grow this circle.
Before school starts, you may want to set up a meeting with the school nurse and your child's teacher to discuss a few things for your child, such as:
- Working out a plan for how your child will receive any medicines he or she may need throughout the day
- Asking teachers to let you know about any illnesses going around school
- Discussing the specific action plan to follow in case your child gets sick, such as emergency contacts and who will pick your child up from school
Turn to your child's teacher for support in avoiding infections. If you feel comfortable, consider writing an e-mail about CF and your child's needs, and ask the teacher to share it with the parents of your child's classmates. This can help other parents understand why it’s important to keep sick children home from school. Need some help? Here is an example of the e-mail you can ask your child's teacher to send:
It’s back-to-school time, which means more time for academics, sports, and sharing space with lots of classmates. And with fall come colds and other illnesses. We have students at our school who have conditions that cause them to get sick more easily. That’s why we kindly ask you to have your children stay home if they are sick. According to school policy, your child should be kept home from school if [INCLUDE SCHOOL'S POLICY ON ILLNESS]. Thank you for the part you are playing in keeping all of our students safe.
Having a conversation about CF
Talking about CF with the people in your child’s life—whether they’re teachers, friends, or family—is something you and your child may consider. It could help make school a better experience for your child, and help you both feel supported by friends and family. Not sure where to start?
For some kids, gym class can be a great way to get some exercise. Talk to your child’s healthcare provider before your child starts school to learn if your child can participate in gym or has any restrictions. Remind your child that it's okay to take breaks.
Make sure your child has everything he or she needs to get through the school day. Some things that may be helpful for your child are:
- High-calorie and fat-containing snacks, like cheese and crackers
- Tissues to carry with them or keep in their desk
- Hand sanitizer for after recess, before lunch, or any other time they need it
- A special reminder to take their medicines. It could be anything from a note to a drawing placed in his or her lunchbox or backpack
CF is a complicated disease, and there's a lot to know about it. While you may know the ins and outs of CF, it can be tough to explain to others. This guide provides simple explanation of what CF is, including:
- What causes CF
- How CF affects the body
- How many people have CF
Caring for yourself
For caregivers at work
It’s your choice whether or not you tell coworkers or employers about your child’s CF. But, if you have a full-time job while caring for a child with CF, you may want to talk to your manager about your needs, and consider educating them about CF and what's involved in CF treatment. Consider letting him or her know about time you may need to take off to be with your child if your child is sick. You can also look into the Family and Medical Leave Act (FMLA) to learn about your rights as a parent under federal law.
Check out the Resource Library
For the downloadable resources found on this page and others in Navigating Life With CF, visit the Resource Library. There you'll find information for caregivers and people living with CF that you may find helpful.