Special care for your special kid
Kids with cystic fibrosis (CF) need special care. This genetic disease can cause problems with many systems in the body, including the lungs, sinuses, digestive and reproductive systems, and sweat glands. With the right care, your child can live a busy, productive life.
Visiting our clinic
Most patients come to the CF clinic at Children's Hospitals and Clinics of Minnesota after having a positive newborn screen for CF. A positive screen does not mean your child has CF. It means your baby could have CF or be a carrier for CF. Our staff has created a helpful video that explains the difference.
To find out if your baby has CF or is just a carrier, we'll make an appointment for your baby to have a sweat test when he or she is about one month old. This test measures your baby's sweat for salt. On the day of the appointment, please don't put any creams or lotions on your baby's skin. You'll also want to make sure your baby is well hydrated. The appointment takes about two hours. First, your baby will have a sweat test, and then you'll meet with our genetic counselor to review your baby's results.
If your baby is diagnosed with CF, we will make an appointment for you and your baby at our CF clinic a day or two after the test. Plan on spending about two hours at the first visit. During this time, you'll meet with one of our CF doctors who will review your baby's diagnosis and answer your questions. If your baby needs to take enzymes for CF, the doctor will start them at this first visit. You'll also meet with our nurse clinic coordinator, who will tell you about how our CF program works and give you educational materials to take home. If you have any questions after your first visit, our nurse clinic coordinator is always available by phone.
During your baby's first year, we will have monthly or bi-monthly visits at the clinic. After your baby's first birthday, we'll see your child at least every three months.
If you have questions about your child's newborn screen results for CF, or if you need to schedule an appointment, please call 612-813-7240.
An overview of the annual visit
Getting to know your child and keeping a close watch on symptoms is the best way to treat CF. That's why we follow guidelines from the Cystic Fibrosis Foundation (CFF) that recommend four clinic visits a year, including one comprehensive annual visit and three routine visits.
The annual visit gives our whole team a chance to check in and see how your child's treatment is working. These visits usually take a few hours. But don't worry, we'll make the visit as painless as possible. And we'll even give your child a passport (if they are old enough) to get stamped with stickers at each stop along the way — and a special prize at the end.
During the annual visit, you'll meet with several members of the team, who will help you manage every aspect of your child's CF:
The annual exam is also a time for your CF team to conduct a few tests to see how CF is affecting your child and monitor whether your child has any complications related to CF. The tests may include:
For those in-between times
In addition to the annual visit, we recommend three shorter clinic visits so our CF team can check up on your child. At these visits, one of our CF doctors or nurse practitioners will record your child's height and weight, do some routine lung function tests and talk with you about nutrition. We may also discuss any new CF treatments that are available. At these visits, you and your child will have the chance to meet with other CF team members as necessary.
If your child needs care between regular visits, we're here for you then, too. In fact, if your child is having a problem or is new to our clinic, we might recommend more frequent visits until your child's health is under control.
CF trouble? Report to headquarters
Increased coughing. Decreased pulmonary function. Poor appetite. Weight loss. These symptoms are often the sign of a CF flare-up, also called a pulmonary exacerbation.
If the flare-up is mild, we can equip you with antibiotics and other treatments to help your child get well in his or her own bed. But if that doesn't work or the flare-up is more severe, we'll admit your child to the hospital for what we call a "tune-up" or "clean-out." This is the best way to help your child heal and to boost his or her lung function.
Most hospital stays are at least one to two weeks, sometimes more. But if your child's condition allows, we'll be sure to schedule hospitalization before or after other important events like birthdays or vacations.
During a hospital stay, we'll focus on the following to help your child get and stay well:
LEARN MORE ABOUT OUR CYSTIC FIBROSIS PROGRAM