Pediatric Clinic Services

About Us

Each member of our Cystic Fibrosis team is passionate about providing patients the most comprehensive and aggressive preventive care possible. We take a highly personalized approach, and partner with you to care for your child. Our work is guided by the philosophy that maintaining excellent health as a young patient affords the best opportunity for longevity, better quality of life and opportunities to benefit from new therapeutic discoveries emerging from CF research.

Care Standard

pediatrics clinic Our Care Center is accredited by the National Cystic Fibrosis Foundation. Our team follows the care guidelines put forth by the CF Foundation, which include:
  • Clinic visits every 3 months for patients 2 years and older. Patients less than 2 years of age are seen more frequently, according to CF Foundation care guidelines.
  • Quarterly throat/sputum cultures
  • Quarterly spirometry
  • Annual chest x-rays
  • Annual blood testing
  • Annual mental health screening for of-age patients and caregivers
  • Quarterly visits with our Social Worker, Dietitian, Respiratory Therapist

Aggressive Preventive Care

We also recognize the importance of closely monitoring infants and toddlers who have been diagnosed with CF, but have not yet developed symptoms. Research has shown that children have evidence of disease activity long before overt symptoms develop. There are many benefits to beginning treatment at an early age, even before symptoms start, including the development of habits that can help maintain your child's health as they grow older.

Pediatric FAQs

What is a sweat test?

A sweat test may be requested by the physician when a patient has symptoms of CF, a family history of CF, or when a newborn has a positive screening test. During the sweat test, sweat is stimulated and a small amount is collected from the forearm. The amount of salt in the sweat is measured in the clinical laboratory.

How is a sweat test done?

Two electrodes containing the sweat stimulating drug pilocarpine are placed on your child's forearm or thigh for five minutes. This stimulation causes the sweat glands to produce sweat. This process can cause a mild tingling feeling during the stimulation, but is not painful. A collection device is placed to collect the sweat for 30 minutes. Once the sweat has been collected, it is taken to the lab for testing.

How long will the test take?

It takes approximately one hour to complete the sweat test collection.

Will I stay with my child during the test?

Yes, parents stay with the child. This test is not painful. It will help if children have something to keep them busy (such as a pacifier, bottle, special toy, or book) during the test.

When will the results be ready?

Results are ready about one hour after the sweat test. You will be seen by a CF Provider in the CF Clinic immediately following the sweat test. Test results are also sent to your doctor.

Will it matter what my child has to eat or drink before the test?

No, diet will not affect the sweat test results.

What if my child is taking antibiotics or other medicines?

Your child should keep taking medicines as prescribed.

Who can I call if I have questions?

For questions, call the Pediatric Cystic Fibrosis Care Center at 913-588-6364 or 913-588-6320.

Respiratory Therapy

Our Respiratory Therapist is present for every clinic visit. The visit with your RT will include inhaled medication review, chest physiotherapy compliance and review of airway clearance techniques.

Pulmonary Function Testing (PFTs) – PFTs are a test that your child will begin performing at every clinic visit around the age of five years. PFTs are a test that measure how well your child’s lungs are working. Changes to the airflow within their lungs is measured with values called FEV1 and FVC. FEV1 is the Forced Expiratory Volume of air that is forcefully exhaled in one second. FVC is the Forced Vital Capacity, which is the total volume of air that is forcefully expelled. Monitoring these values for significant changes can alert your child’s care team to illness or damage to the lungs.

*Important Note: Our clinic follows the infection control guidelines of the Cystic Fibrosis Foundation. Therefore, in the outpatient setting PFTs are performed in the clinic room at the start of the visit and in the inpatient setting, PFTs are done in the patient’s hospital room.

Testimonials

“The people are fantastic. They’re cheerful, they ask questions, and make sure that I understand what’s going on. They’re quick, they get me in on-time almost always, and they seem to care individually about my children.”

“They are very knowledgeable about CF and how best to help my son. They are prompt and caring. They know him.”

“I like that the team takes a personal interest in my child, and that my child is not just a number to them. They truly care about her and, by extension, the rest of the family. They take the time to talk to her on her level and me on mine.”

We are here to partner with you for the care of your child. Close contact with our patients by phone and our accessibility to patients for questions is the key to our success.

Want to learn more about our CF Center? Email the Pediatric CF Nurse Coordinator at lbettlach@kumc.edu.

Appointments and Referrals

The Cystic Fibrosis Clinic for pediatric patients is held every Tuesday afternoon, as well as 1-2 Fridays every month (usually the second and/or fourth Fridays of the month).

To schedule an appointment, please call 913-588-6364 or 913-588-6320. We ask that you notify our team 24 hours prior to your appointment if you need to reschedule or cancel.

Please fax records to 913-588-6167.