Clinic Visits: What to Expect
The Cystic Fibrosis Foundation (CFF) has established guidelines for maintaining health and monitoring symptoms of CF, to include annual clinic visits, routine follow-up clinic visits, and PRN or "as needed" clinic visits—sometimes called "sick visits." These guidelines reflect the most current evidence and expert opinion on management of CF.
Once a year around, but not on, your child's birthday, an annual visit is scheduled. The purpose of this visit is to monitor every aspect of your child's cystic fibrosis (CF). Plan on at least a half day; more with a lunch break.
Meet with Physician or Nurse Practitioner and CF Nurse
These tests are essential in monitoring for complications with CF:
- Complete blood count to check for anemia, clotting dysfunction, and the body's response to infection
- Basic chemistry to check for salt imbalances, and the presence of adequate oxygenation.
- Random glucose (see GTT below) to check for the presence of abnormally high levels of sugar in the blood (a simple test to screen for CF-related diabetes).
- Liver function tests to check liver health and screen for CF-related liver disease.
- Immune globulins to check for an allergic response of the body and to screen for a condition called allergic bronchopulmonary aspergillosis (ABPA)
- Vitamin levels to check for inadequate absorption of fat soluble vitamins that can lead to complications such as vision lose or poor bone health.
Glucose Tolerance Test (GTT)
This test checks for early signs of CF-related diabetes so that if detected, it can be treated early.
Sputum or Throat Cultures
This is done at every visit. The culture helps your provider monitor what organisms are growing in the respiratory tract and choose the best treatments for your child.
A chest x-ray is a very common procedure to help monitor any changes in the lungs and airways.
Pulmonary Function Tests (PFT's)
This breathing test monitors your child's lung function and is performed at every visit once he/she is old enough to perform the test (about 5-6 years of age).
Respiratory Care Review
Respiratory care practitioners perform all airway clearance treatments, aerosol therapy, and pulmonary function testing for your child. During visits they work closely with you to help you learn the skills to administer respiratory therapy treatments for your child at home and to answer your questions.
Nutrition is vital to promote strong lung function. A nutritionist works with parents and children with CF to ensure the child with CF consumes the calories he/she needs each day. The nutritionist also tracks growth and weight gain over time and provides a comprehensive nutrition plan, to include helpful recipes and tips to use at the grocery store.
Social Work Assessment
A social worker is available to provide children and families a wide range of important services:
- Emotional support and counseling to children and their families.
- Crisis intervention.
- Help with adjusting to illness, hospitalization, and outpatient treatment.
- Grief and loss counseling and referral.
- Short-term therapeutic interventions for children, parents, and their families.
- Access to hospital and community resources.
- Mental health assessments for children experiencing a mental health or emotional crisis.
- Case coordination, consultation, and discharge planning.
- Advocacy for children and families at Children's and in the community.
- Professional consultation.
Routine Follow-up Visit
Routine follow-up visits are scheduled three times a year or every three months between annual visits. During the routine follow-up visit you can expect to meet with a CF physician or nurse practitioner, undergo lung function tests, complete a height, weight, and nutritional assessment, and meet with other CF team members as needed. This is also an opportunity to review standard treatments and learn about new available therapies.
As Needed PRN Visit
If your child is sick, has a cold that lingers, or develops a cough or other difficulties, call the clinic nurse at (612) 813-3300 to discuss your child's symptoms. We may advise treatment and/or schedule a PRN visit at the CF Center. Additional tests may be ordered based on your child's symptoms.
Other PRN visits may be scheduled more frequently if you child is having other concerns such as weight gain, or has just recently been diagnosed with CF. In fact, if you are new to CF our center recommends more frequent visits at first, until you feel you have received the right amount of education, have met appropriate team members and feel comfortable with your child's care.