Cystic Fibrosis Center's Philosophy of Care
Prevention | Psychosocial Aspects l Teens and Adults |
Prevention
Respiratory problems are the most serious aspect of Cystic Fibrosis (CF). Almost everyone with CF eventually develops lung disease. This is why slowing its progression is so important and why prevention is the cornerstone of our philosophy of care.
The prevention of disease has seven components:
- Frequent visits to, and contact with, our Center
- Working with primary care physicians
- Adherence to your treatment plan
- Exercise
- Nutrition
- Infection control
- Avoiding tobacco smoke
My Care Connection can help patients and parents take a more active role in prevention.
Frequent Visits
Outpatient visits to the Cystic Fibrosis Center at Cincinnati Children's Hospital Medical Center are scheduled for approximately every three months. Visits are more frequent for newly diagnosed children and for acute illness.
These visits are essential to monitor pulmonary and nutritional status. By monitoring your child this often, we can detect changes and provide treatment before problems become more difficult to manage.
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Working With Your Primary Care Physician
Individuals with CF should continue to see their primary care provider for routine childhood illness, vaccines and other standard care. Our Center maintains communication with primary care physicians. Please notify us if you change your primary care physician.
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Treatment Plan
Deciding on and following a treatment plan is very important. Our team can give you tips on how to make treatments more pleasant so that the times your child refuses treatment are few and far between.
Exercise
Exercise is as important for children with cystic fibrosis as it is for all other children. Most children with cystic fibrosis can participate in almost any physical activity and should be encouraged to take part in activities such as swimming, bicycling and running, and to participate in sports and games.
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Nutrition
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. The goal is normal growth and weight gain.
The Cystic Fibrosis Center nutritionist will monitor your child's nutritional status and work with you to find ways to optimize growth and weight gain with diet, enzymes and supplemental vitamins. Studies show that good nutrition helps improve pulmonary status.
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Infection Control
Hand washing is the single most important way to control the spread of infection. Teach your child hand washing at an early age. Encourage friends and family members to wash their hands before holding or playing with your child. Another important way to prevent infection is through childhood immunizations and an annual flu shot.
Smoking
Cigarette smoke is especially harmful to people with lung disease. If you smoke, we advise quitting, and the CF team will provide you with resources to help you.
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.
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Psychosocial Aspects of Cystic Fibrosis
Cystic Fibrosis is a serious chronic illness, one that can cause social, emotional and psychological problems. It's normal for you to be concerned, to feel worried, guilty, fearful, angry and resentful. But it's important that you work through these feelings with your family.
The social worker and other team members at the Cystic Fibrosis Center can help. Our goal, and our expectation, is for you and your child to have as normal a life as possible.
The Cystic Fibrosis team offers an annual education day for newly diagnosed cystic fibrosis patients and their families.
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Caring for Teens and Adults
Your child may be very young when first diagnosed with cystic fibrosis. But when your child becomes a teenager, he or she will begin to experience some special issues. Two of these can be especially difficult: embarrassment at being different and desire for independence.
Our health care team can help you and your teenager prepare for and deal with these issues during adolescence. We also expect your teenager to grow into adulthood and to have career goals, financial concerns and a family if he or she chooses.
We will help your teenager as he or she moves toward adult care and an adult lifestyle through our transition program. 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.
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