Cystic Fibrosis Center

Care Philosophy

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.

Our Prevention Plan

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Frequent Visits

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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.

Working With Your Primary Care Physician

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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.

Treatment Plan

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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

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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.

Research has shown that children with CF benefit from physical activity in many respects including: slower decrease in lung function, improved exercise tolerance, higher quality of life, and improved longevity.

Nutrition

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Eating a healthy diet, rich in calories and nutrients, is an important part of CF care. Studies have shown that good nutrition helps improve pulmonary status over time. Because CF may affect how the body absorbs calories and vitamins, as well as increasing the body’s needs for calories due to infections, most people need to eat a high calorie diet.

The CF Dietitians will help evaluate your child’s nutrition by reviewing food and mealtimes, weight and growth, and vitamins, medications and enzymes. Then, with you and the rest of the CF team, they will help make a plan to optimize your child’s nutritional status.

Infection Control

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Hand washing is the single most important way to control the spread of infection, so teach your child how to properly wash his/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. Each fall, your child and all immediate family members should receive annual flu shots to protect your child and family from seasonal flu.

Get details about our latest infection control policies and practices.

Smoking

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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:

Don’t smoke in the home or car, even if windows are open
Always sit in the non-smoking sections of restaurants or visit restaurants that are smoke-free
Do not smoke when your child is near you, even if you are outside
If choosing a child care provider, choose one who does not smoke

Psychosocial Aspects of Cystic Fibrosis

Cystic Fibrosis 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.

Caring for Teens and Adults

Your child may be very young when first diagnosed with cystic fibrosis. As he/she reaches adolescence, he/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 he/she so chooses. Our transition program will help your teenager as he/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 he/she becomes an adult.

Transition Begins at Diagnosis

To prepare patients for eventual transition to adult care, the process needs to begin at the time of diagnosis. With each stage of development, children with CF can learn about CF, their medications and treatments and, ultimately, how to manage their own care. The CF health care team will work with you and your child to meet each developmental milestone so that, by the time he/she transfers to adult care, he/she will be independent in managing his/her CF. Here is a list of some of the developmental milestones we will work with you and your child to achieve.

Toddlers

Good Handwashing
Help set up vest, hold nebulizer and push buttons

Pre-School

Swallow pills
Recognize medications they take

Early School-Age

Basic understanding of CF
Know names of medicines

Later School-Age

Understand why they do airway clearance
Show how they do airway clearance

Pre-High School

Start to be seen independently for part of clinic visit
Know when, how and why to take enzymes

Early High School

Recognize and discuss signs of illness
Discuss college/vocational/career choices

High School

Call when ill, to make appointments, to get prescription refills
Understand and manage most / all aspects of CF care

Online Tool for Families

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. And you can send a message to your healthcare team between visits.

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Glossary of Terms

Read an extensive list of glossary terms (A to Z) associated with cystic fibrosis in portable document format (PDF). Courtesy of the Baylor College of Medicine.
Download the Glossary

Cystic Fibrosis Center