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:
- Let’s talk. You and your child will meet with a CF doctor or nurse practitioner and a CF nurse, who will ask you basic questions about your child’s health. You’ll have plenty of time to ask questions or talk about concerns.
- Nutrition check. Good nutrition is important for little lungs. A dietitian will meet with you and track your child’s growth and weight. The dietitian will also help you create a healthy meal plan for your child, including helpful recipes and tips for nutritious grocery shopping.
- Extra support. A social worker will meet with you and your child and connect you to a range of services, from counseling to community resources.
- Take a deep breath. A respiratory care practitioner will conduct any breathing tests your child needs and teach you how to give your child respiratory treatments at home.
- Understanding genes. A genetic counselor is available to review you or your child’s questions about how CF is inherited and genetic testing options for your child and family.
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:
- Complete blood count to check for anemia and problems with clotting and assess the body’s ability to fight infection.
- Basic chemistry to check for salt imbalances and to make sure there’s enough oxygen in the blood.
- Random glucose to check for high levels of sugar in the blood, which could mean your child has 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 and to screen for a condition called allergic bronchopulmonary aspergillosis (ABPA).
- Vitamin levels to make sure there are enough vitamins in the body.
- Oral Glucose tolerance test (OGTT) to checks for early signs of CF-related diabetes.
- Sputum or throat cultures to see what organisms are growing in your child’s respiratory tract and choose the best treatments for your child.
- Chest X-ray to check for any changes in the lungs and airways.
- Pulmonary function tests (PFTs) to check how well your child’s lungs are working.
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:
- Physical therapy and exercise. Your child will meet with a physical therapist who will help him or her work on ribcage/chest mobility and strengthening. Four to five times a week, your child will have 30 to 45 minute physical therapy sessions, which include a cardio/pulmonary workout.
- Rest. Rest is key to recovery. Although your child’s treatment schedule will be packed with meals, meds and physical therapy, we will be sure to include adequate time for rest.
- Antibiotics. Your child will receive antibiotics through an IV or aerosol. These are the most effective ways to get medicine to the lungs. Your CF doctor, nurse practitioner or pharmacist can provide specific details about your child’s antibiotics.
- Airway clearance. This important part of the treatment process helps loosen thick, sticky mucus in the lungs so it can be cleared away and your child can breathe easier.
- Nutrition. Children may lose weight during a CF flare-up. We will provide extra calories and the dietitian will monitor your child’s weight gain and recommend recipes to use at home.
- Activities. It’s tough to feel good if you aren’t having any fun. That’s why Children’s offers a variety of play materials — such as toys, video games, movies and arts and craft projects — and organized playroom events.
- School. We suggest that you work with your child’s school to obtain lessons and homework. Children’s provides computers with Internet access to help your child study and complete assignments. If your child has an extended stay, talk with your CF social worker about arranging for a tutor to help your child to keep up with their studies.