6 Tips on Caring for a Child with Cystic Fibrosis

Cystic Fibrosis (CF) is an illness that makes the body produce thick and sticky mucus, severely affecting the lungs and digestive system. As a hereditary disease, cystic fibrosis occurs in children when both parents carry the defective gene. The condition can be life-threatening and people diagnosed with the disease requires daily care.

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Managing a complex health condition like
cystic fibrosis can be challenging, especially when it involves children who don’t completely understand their disease and why they need to undergo treatment. This is why parents need to be proactive about keeping their children healthy. If you have a child with CF, here are some helpful strategies you can do.

Prevent the Spread of Germs at Home

One of the things you need to be aware of is that children with cystic fibrosis have a high risk of getting lung infections. To protect your child’s health, make sure to take the necessary steps that will help reduce the risk of infection—even in your home. Here are some ways you can prevent spreading infectious germs:

  • Encourage everyone in your home to practice proper hand hygiene. Remind your child and other household members to always wash their hands with soap and water before they eat and after they cough, sneeze, or blow their nose.
  • Make sure your child and all household members are up to date on their vaccinations, including their flu shots.
  • Educate your child and members of your family to refrain from sharing personal items like water bottles.
  • Avoid exposing your child to second-hand smoke.
  • If anyone in the household becomes ill, keep them away from your child with CF. Teach your child to also stay from sick family members.

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Attend Regular Health Checkups

The best source of information about your child’s CF is their doctor and other healthcare professionals. They can help recommend treatment to manage symptoms and advise you on monitoring for signs of complications. Your child’s healthcare providers can also provide you and your family with much-needed support for dealing with the illness.

To ensure you are always on top of your child’s health needs, schedule regular health checkups with their doctor and follow the recommended treatment. Although attending medical appointments can take some time away from your daily schedule, they can help maintain your child’s health and manage symptoms. Remember to ask their doctor how often your visits should be. In case you miss a doctor’s appointment, call and reschedule one as soon as possible.

Perform Airway Clearance Therapy

Since thick mucus is produced by children with CF, you need to help clear your child’s lungs by performing airway clearance therapy. If you are uncertain about doing it at home, ask your doctor for advice. They will also recommend you do at least one session each day.

To get your child into the habit of doing airway clearance, set a schedule for the session at the same time every day. You can also make the technique more comfortable for them through the following:

  • Match the schedule of your child’s therapy session with their favorite TV show, so they can watch and be entertained while receiving treatment.
  • Make the therapy session fun by making it a competition of who can cough the deepest between the two of you.
  • Create a ritual for each therapy session. Let your child read their favorite book, play a game, or enjoy a treat once they have completed the treatment.

Ensure Snacks Are Always Available

Getting proper nourishment is a vital factor for anyone treating an illness. For your child with CF, their condition can affect how their body absorbs nutrients, so they need to eat more calories than other kids. To ensure they can have a snack anytime, keep foods rich in calories, protein, and healthy fats on hand, including:

  • Protein bars 
  • Trail mix 
  • Granola with nuts 
  • Nut butter 
  • Milk 

Create a Partnership with Your Child’s School

Managing your child’s cystic fibrosis doesn’t just occur at home; it happens everywhere your child goes—even at daycare or school.

Although it is entirely up to you whether you want to share your child’s medical condition with their school, getting the support of your child’s teachers can help your child perform their best academically while staying healthy. Once you decide to let your child’s school know about his illness, you can work with them to best accommodate your child’s health needs. For example, you can ask your child’s educators to:

  • Give your child privacy and time to perform airway clearance therapy and take their medications. 
  • Provide some adjustments in attendance when your child needs to go to their medical appointments 
  • Extend assignment submissions and help your child catch up on lessons they may miss because of illness or medical appointments.

Keep Your Child Involved About Their Condition

Be honest with your child about their cystic fibrosis to be more aware of their health and eventually learn about caring for themselves. When you start them young, they become used to healthy habits. This also encourages them to become independent as they grow up.

You can begin by discussing their condition and why they need to take medicines and do airway clearance therapy. Remember to inform them about how to talk to other people about their illness as well. In addition, teach simple healthy habits, like regular hand washing. When they reach 10 years old, your child can start taking care of their own therapeutic equipment. By the time they are in high school, your child can be responsible for storing and taking medications.

Caring for a child with cystic fibrosis has its sets of challenges. At times, parents can get worried about their children’s future. But many children with the condition grow up and get the opportunity to attend college, get married, and have families. With the proper care and medications, your child can enjoy a quality life.

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