Do you have a child with cystic fibrosis (CF)? Managing a complex health condition like CF can be challenging. There are proactive steps you can take to help protect your child’s health. At the same time, it’s important to take care of your own health too.
Let’s explore seven strategies that may be useful.
To help clear your child’s lungs, a doctor may teach you how to perform airway clearance therapy. They will likely encourage you to do at least one session of this therapy per day.
To make it a little easier for your child, it might help to:
- schedule your therapy session to coincide with your child’s favorite TV show, so they can watch it while receiving treatment
- add an element of light competition to your therapy session — for example, by seeing who can cough the deepest cough
- develop a ritual where you read a favorite book, play a favorite game, or enjoy another special treat after each session
It might also help to schedule your therapy sessions at the same time every day, so you and your child get into the habit of making it a priority.
Children with CF are at heightened risk of lung infections. To help keep your child safe, take steps like the ones listed below to reduce the risk of infection in your home:
- Keep your child and other household members up to date on vaccinations, including the flu shot.
- Encourage your child and other household members to wash their hands with soap and water before eating and after coughing, sneezing, or blowing their nose.
- Teach your child and other household members to avoid sharing personal items, such as water bottles.
- If another member of your household gets sick, ask them to stay at a distance from your child with CF.
These simple prevention strategies could make a world of difference to your child’s health.
Your child’s doctor and other healthcare professionals can provide much-needed information and support. They can prescribe treatments to manage your child’s symptoms and monitor them for signs of complications.
To stay on top of your child’s health needs, it’s important to schedule regular health checkups with their doctor and follow their recommended treatment plan. Making time for medical appointments isn’t always easy or convenient, but it can save you and your child pain in the long run.
Ask their doctor how often you should visit them. If you miss an appointment, reschedule it right away.
Children with CF need to eat more calories than the average kid. To make life a little easier, stock up on snacks that are easy to grab and rich in calories, protein, and heart-healthy fats.
For example, consider keeping some of the following foods on hand:
- granola with nuts
- trail mix
- nut butter
- protein bars
- nutritional supplement beverages
Consistently communicate with your child’s school to develop a plan to accommodate their health needs. For example, you might ask their school to:
- give them time and privacy to perform airway clearance therapy
- let them take medication
- adjust attendance rules to let them go to medical appointments
- provide extensions and help them catch up on lessons and assignments they miss due to medical appointments or illness
If your child’s school is reluctant to accommodate their needs, it might be time to explore your legal options. In the United States, public elementary and high schools are legally required to provide accessible education to children with disabilities.
To equip your child for an independent life, it’s important to teach them self-management skills. As they get older and take on more responsibility for their care, it can help lighten your load.
You can start early, by teaching your child basic information about their condition, how to talk to other people about it, and simple strategies for staying safe, such as hand washing. By the time they are 10 years old, many children can set up their own therapeutic equipment. By the time they hit high school, many are mature enough to take primary responsibility for storing, carrying, and taking medications, as well as disinfecting their equipment.
To avoid burnout, it’s important to practice healthy habits and take time out for yourself. Try to get seven to nine hours of sleep per night, eat a well-balanced diet, and exercise regularly. Schedule time in your calendar to socialize with loved ones and take part in activities you enjoy.
To help limit the stress of caregiving, it might also help to:
- ask for and accept help from others
- set realistic expectations for yourself and respect your limits
- join a support group for caregivers of people with CF
- look for other caregiving services in your community
If you’re finding it difficult to manage your stress levels, make an appointment with your doctor. They might refer you to a mental health professional or other support services.
CF affects many aspects of your child’s life, as well as your family’s daily habits. However, staying up to date on your child’s health checkups and following their recommended treatment plan can help keep their symptoms under control. Developing healthy habits at home, a good working relationship with your child’s school, and a solid self-care plan can also help you stay on top of your child’s health needs.