Pediatric Services

Pediatrics CF

Patient Care

Our patient-centered approach allows us to provide the best possible care for children with cystic fibrosis, in both our in-patient and outpatient facilities. Learn more about how we can help you provide the best care possible for your child. 

Diagnosis

If you are a primary care provider needing to schedule a sweat test, please call 913-588-6364 or fax your request to (913) 588-6167. 

Diagnosis of Cystic Fibrosis
  • Newborn Screening In all 50 states, a blood test often known as a newborn screen, is performed in the first two weeks of a child’s life. The newborn screen includes screening for cystic fibrosis. If the newborn screen comes back positive for possible CF, a sweat chloride test is then done to either rule out or confirm a diagnosis. The sweat test will measure the amount of salt in a child’s sweat. This is often the only test that is needed for diagnosis. However, your child may have other tests to evaluate his or her condition, including:
    • Stool evaluations to check for absorption of fat.
    • DNA tests to confirm diagnosis, if needed.

Outreach Clinic

Learn about our Outreach Clinic located in Pittsburg, Kansas.

Family Advisory Council

Coming in January 2017! The Pediatric Cystic Fibrosis Team is working to develop a Family Advisory Council. The purpose of this Council is to create an impactful group of individuals who have a vision of care for their child with CF who would like to support and assist in the growth of our Care Center, and uphold the standard of care set by the Pediatric CF Care Center and the Cystic Fibrosis Foundation. The mission of this council will be to provide an atmosphere of goal-oriented activities to ensure that we as a CF Care Center are meeting the needs of our patients and families, by providing the education and support necessary for success in caring for their child with CF.

This council will be led by our patients’ family members and caregivers. The group will consist primarily of caregivers of CF patients within our Care Center, as well as one or two Care Center staff members who will be present at each meeting. Staff will support the group’s overall goals and listen to ideas on how we can continuously improve to best serve the needs of our families. Your voice and your participation is essential to the continued growth and quality of the Pediatric CF program.

If you are interested in becoming a member of the Family Advisory Council, contact Lyndsay Marriott at 913-588-6320 or by email.

Pharmacy

Your CF Pharmacist

As a part of your Cystic Fibrosis Care Team, your CF pharmacist is available to help you understand the benefits and possible side effects of your medications. By assuring that your dose and medication timing are right for you and your lifestyle, your CF pharmacist can help make sure you are getting the maximum benefit from your medications. Your CF pharmacist is available in clinic, by email or phone for any medication related questions or issues.

We offer services to help you stay on track with your treatment plan:
  • Free shipping with tracking numbers.
  • A pharmacy patient advocate can assist you with your insurance, billing, and medication payment assistance questions.
  • We can contact you each month before your refills are due or set you up for automatic refills.
  • We can send a text message when medications are ready to be picked up or have been shipped.
  • Free parking with validation and medication pick-up from the pharmacy.
Learn more about the CF Pharmacy and University of Kansas Pharmacy Services.

Research

  • CFF Clinical Trials
  • Research Coordinators
    • Adam Schooley can be reached at 913-588-1572 or email.
    • Larry Scott can be reached at 913-588-4020 or email.

Our Team

Learn about our Pediatric Cystic Fibrosis team members.