Zeroing in on cystic fibrosis
The cystic fibrosis (CF) program at Children’s Minnesota offers a comprehensive array of services to care for CF, a complex genetic condition that causes cells to produce mucus that is thicker and stickier, resulting in mucus ducts which are blocked and affects the function of certain organ systems.
From diagnosis to testing and treatment, Children’s multidisciplinary team of CF specialists provides complete care for children with CF and cystic fibrosis transmembrane conductance regulator (CFTR)-related metabolic syndrome.
Diagnosing CF often begins with a newborn screening. Soon after birth, all babies born in the United States are checked for certain medical conditions.
A blood sample, taken from a quick prick of a newborn’s arm or heel, is tested for the most common gene mutations of CF.
If the newborn’s screening comes back positive, the baby will often be referred for a sweat test, which is a painless test where sweat is collected from the skin and analyzed for salt content. Same-day results are usually available and a genetic counselor discusses the results.
Since CF is a genetic disease, genetic testing may also be done where a blood sample is sent to a special lab. These results may take several weeks to complete.
Checkups? Children’s has ’em covered
We see CF patients for checkups four times a year, three routine visits and one annual visit, which is based on Cystic Fibrosis Foundation guidelines.
We’ll schedule the annual labs around the first quarterly visit to monitor every aspect of the condition. During that visit, we will obtain:
Laboratory evaluations to test:
- Complete blood count
- Basic chemistry
- Random glucose
- Liver function
- Immune globulins
- Vitamin levels
- Oral Glucose tolerance test (OGTT)
- Sputum or throat cultures
- Chest X-rays
- Pulmonary function tests (PFTs)
At the yearly annual team visit you will meet other members of our team for a:
- Respiratory care review
- Nutritional evaluation
- Social work assessment
- Genetic counseling session
During all routine follow-up visits, we also offer:
- A complete height, weight and nutritional assessment
- Lung function tests
- Sputum and throat cultures
- Review of airway clearance measures
Time for a tune-up
Sometimes, despite our best efforts, CF can flare up and kids need extra care in the hospital. In these cases, we will admit your child to Children’s for what we call a “tune-up.” This means we’ll work on getting your child’s lung function back to his/her best.
Support and other services
CF affects your whole family. That’s why Children’s provides an active CF Parent Support Group. It’s a safe space to share feelings and seek support from other parents of children with CF. We also have an active CF family council.
And as an organization dedicated to family-centered care, we offer additional child and family services and resources, such as financial information, chaplaincy and more.