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Respiratory problems are the most serious complication from cystic fibrosis (CF). Almost everyone with CF eventually develops lung disease. This is why slowing CF’s progression – the cornerstone of our care philosophy – is so important to the children and families we treat. Our plan for the prevention of CF-related disease has seven components.
We schedule outpatient visits for patients approximately every three months. Visits are more frequent for newly diagnosed children and for children with acute illness.
These visits allow our team to monitor your child’s pulmonary and nutritional status. The frequency of the visits allows us to detect changes and provide treatment before problems become more difficult to manage.
Individuals with CF should continue to see their primary care provider for routine childhood illness, vaccines and other standard care. Our center stays in close contact with your primary care physician to coordinate your child’s care plan. Please notify us if you change your child’s primary care physician.
Deciding on and following a treatment plan is very important to your child’s long-term health. Our team can give you tips on how to make treatments more pleasant, making this part of your child’s care as comfortable – and consistent – as possible.
Exercise is as important for children with cystic fibrosis as it is for all other children. Most children with cystic fibrosis can participate in most physical activities. You should encourage your child to take part in activities such as swimming, bicycling and running, and to participate in sports and games.
When CF affects the digestive system, the body does not absorb enough nutrients. Because not all calories are absorbed, and because of increased calorie use from chronic infections, most people with CF need to eat a high-calorie diet to maintain normal growth and weight.
Our nutritionist will monitor your child’s nutritional status and work with you to find ways to optimize growth and weight gain. This may include diet, enzyme and supplemental vitamin therapies. Studies show that good nutrition helps improve pulmonary status, so this aspect of your child’s care should not be taken lightly.
Hand washing is the single most important way to control the spread of infection, so teach your child how to properly wash her hands at an early age. Encourage friends and family members to wash their hands before holding or playing with your child. Also, be sure your child’s immunizations are up to date, and use annual flu shots to protect your family from seasonal flu.
Cigarette smoke is especially harmful to people with lung disease. If you smoke, we strongly encourage you to quit. The CF team can provide you with resources to help you quit.
Until you are able to quit, there are ways to reduce your child’s exposure to smoke:
CF is a serious chronic illness, one that can cause social, emotional and psychological problems for your entire family. It’s normal for you to be concerned or to feel worried, guilty, fearful, angry and resentful. But it’s important that everyone in your family works through these feelings.
Our social worker, along with other team members at the Cystic Fibrosis Center, can help. Our goal is to help you and your child to have as normal a life as possible. In addition to working with individual families, we offer an annual education day for newly diagnosed cystic fibrosis patients and their families.
Your child may be very young when first diagnosed with cystic fibrosis. As she reaches adolescence, she will likely encounter unique challenges. Two of these can be especially difficult to address: embarrassment at being different and the desire for independence.
Our healthcare team can help you and your teenager deal with these issues during adolescence. We expect your teenager to grow into adulthood and have career goals, financial concerns and a family if she so chooses. Our transition program will help your teenager as she moves toward adult care and an adult lifestyle. Your teenager will meet adult CF specialists at Cincinnati Children’s who will eventually care for your young adult at the University Hospital CF Center. By making this a smooth, cooperative transition, we can reach the best possible care outcome for your child as she becomes an adult.
Cincinnati Children’s offers a secure online tool to help you manage your child’s health. MyChart gives you access to your child’s medical record, allowing you to view test results, a list of medications, appointments, follow-up instructions, diagnoses and more.
> LEARN MORE ABOUT MYCHART
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