Cystic fibrosis (CF) is a complex genetic disease that requires a consistent care plan. Children and infants with CF rely on parents and caretakers to be proactive with their treatment, which can be a time-consuming part of each day.
For many families, adhering to a care routine becomes easier over time. There are proactive steps to help protect a child’s health as the years go on.
Become Educated on Care Practices
After a child or infant is diagnosed with CF, doctors provide resources to help the adults in the child’s life learn about the disease and recommended treatments. Understanding the disease will make it easier to see the importance of consistent treatment.
Commit to Your Routine
The treatment regimen for a CF patient starts in the morning and ends at bedtime, making it a staple in the lives of both a child and those around them.
Throughout the day, caring for a child’s CF will typically take over an hour. Chest physiotherapy — also known as airway clearance treatment — is usually done at least once a day but may be prescribed more frequently. These treatments loosen mucous from the child’s lungs, helping to maintain pulmonary function.
Try to develop a ritual that makes the treatment an important part of each day, making the experience as pleasant for the child as possible.
Take Precautions to Prevent Germs
Children with CF are at a higher risk of developing lung infections. To reduce the risk of infection for a child with this chronic disease, make sure you and other household members have up-to-date vaccines. If someone has a contagious disease, you should ask them to physically distance themself from the child until the illness subsides. Practicing proper hygiene is also crucial.
Don’t Skip Health Check-Ups
Regular health check-ups can aid in managing a child’s symptoms. The doctors will look for signs of complications and provide much-needed support. Ask your child’s doctor how often you should have checkup appointments to monitor your child’s health.
Encourage Children to Be Involved in their Treatment
As a child gets older, they can be more active participant in their CF treatment. When a child takes more responsibility for their care, it teaches self-management skills and independence.
Start by talking to the child about their condition, including how to tell other people about it. Eventually, they can assume the responsibility of using therapeutic equipment and taking medications. Remember that the quality of treatment should always take priority, so treatment should be supervised until the child is ready.
It’s estimated that only 12 to 16 percent of children with cystic fibrosis receive the recommended caloric intake per day. Other important aspects of treatment, such as airway clearance, completing aerosolized medications and taking enzymes are also lacking in many cases. There is a need to understand and address barriers that prevent children from adhering to a regular schedule of treatment.