October 29, 2021
Cystic fibrosis is one of the most common genetic health conditions in the US, with nearly 1,000 newly diagnosed children every year. Cystic fibrosis is a condition that progresses with time and can cause health complications, like malnutrition and difficulty breathing.
While there is currently no cure for cystic fibrosis, treatments can help reduce symptom severity and slow the progression of the disease. Helping a child manage a complex health condition like cystic fibrosis can be challenging. But developing a consistent treatment plan can help you and your child establish a routine that can help ease the stress of managing a chronic illness.
Work With Your Child’s Care Team
If you’re unsure how or where to start, ask your child’s doctors and nurses how you can best care for your child at home. Your child’s team of caretakers can help you understand what kind of equipment you might need at home for airway clearance therapy, how to manage your child’s diet, and what types of exercise and how much is ideal for your child.
The first step to being able to help your child is to learn as much as you can about their illness. The Cystic Fibrosis Foundation is a great resource for information about cystic fibrosis. You can always reach out to your child’s care team if you have specific questions regarding their diagnosis and treatment.
Take Steps to Reduce the Risk of Infections
People with cystic fibrosis are more susceptible to lung infections and are therefore more likely to experience complications from lung infections. An infection that seems benign to most people, such as the common cold, can be severe for someone with cystic fibrosis.
Steps that you and your child can take to help reduce the risk of infections include:
- Constant hand washing
- Keep your child and everyone in your household up-to-date on all vaccinations
- Stay at least 6 feet apart from other people who have cystic fibrosis
Coordinate With Your Child’s School or Camp
Going to school and participating in social activities help your child experience a sense of normalcy, build independence, learn social skills, and, most of all, give them the freedom to have fun.
Before enrolling your child in school, daycare, or camp, talk to the director/coordinator to develop a plan of care for your child. A plan for your child may look like something like:
- Precautions to reduce the risk of infections
- Taking medication every day at the same time
- Allowing them to have food in class
- Granting leniency for missing classes due to necessary, recurring doctors’ appointments
- Giving them extra time to finish assignments and offering extra help or a tutor to help them catch up on any missed lessons
Share Responsibility With Your Child for Their Care
Children who take part in their care often stay healthier. When your child is old enough, start encouraging them to take responsibility for certain parts of their treatment. A good first step is to teach your child about their condition and how their treatment helps them. This way, they can become more comfortable talking about their condition. Once they’re old enough, you can teach them simple ways to stay safe, like washing their hands to prevent getting sick with infections like the common cold.
At the right time, you can start by having them be responsible for one small task, like setting a timer to take their medication. Children with cystic fibrosis who are taught self-care become adults who are confident in managing their condition.
Consider Hiring a Home Care Nurse
If the daily care tasks become overwhelming, consider hiring a home health nurse. At JSP Home Care Services, our licensed nurses not only help children with their cystic fibrosis treatment but also help families manage the stress and overwhelm that comes with caring for a child with a chronic illness. JSP Home Care Services’ English/Spanish bilingual administrative staff and nurses are here for you. To learn more about home care services for your child in New York City, contact us online or call us at 866.860.2528.
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