What to expect
Your first visit - diagnosis
Diagnosing cystic fibrosis is a multi-step process. It usually starts with a newborn screening test performed by the state. If the screen is abnormal, infants and children are then referred to a Cystic Fibrosis Foundation-accredited care center like Children’s Mercy for further testing.
When you come for your first appointment, the CF specialist will do a comprehensive examination of your child. We will do a sweat test and genetic testing along with your child’s clinical evaluation.
Although most people are diagnosed with CF by the age of 2, some are diagnosed as older children or as adults. A CF specialist can order a sweat test and recommend additional testing to confirm a CF diagnosis at any age.
Our team approach to care at Children’s Mercy
If your child is diagnosed with CF, you will have regular appointments with a team of specialists who will get to know your family and work closely to coordinate care for your child’s specific needs.
At the Children’s Mercy Cystic Fibrosis Care Center, we take pride in our diverse group of dedicated CF experts and the outstanding care we provide for children with CF. Our care team includes providers, nurses, respiratory therapists, social workers, dietitians and pharmacists.
We have four pediatric pulmonologists and one pediatric nurse practitioner who provide care in CF clinic. Several team members travel to our outreach clinic in Joplin, MO once a month for families who live closer to that location.
Once you have established care in our CF clinic, we encourage you to pick a primary CF provider. That provider partners with a nurse, social worker, and dietitian so a core team of people provide expert care for your child. This approach allows for our team members to develop close, long-term relationships with you and your family.
Ongoing health education at each visit
Your family will come to Children’s Mercy for a comprehensive CF clinic visit approximately every three months. We work hard to streamline your time in the CF clinic while making it a worthwhile and valuable experience.
Our CF Care Center uses a Quarterly Visit Curriculum. This means that during each clinic visit, we choose to focus on a different aspect of CF care:
- Respiratory Care
- Nutrition Care
- Psychosocial Care (mental and emotional health)
- Annual Review (focusing on medications and overall health)
During these visits, one team member will spend extra time with your family to focus on education in their area of expertise and planning for your child’s upcoming growth and development milestones.
Our goal is to teach your family everything you need to know about CF and how to best manage it. Even if your visit focus is on a different aspect of care, you can always see other team members, such as the dietitian, pharmacist, or social worker, if you need to.
Coordinated care for all your child’s needs
The Children’s Mercy Cystic Fibrosis Care Center has strong collaborations with other specialists that may be important for your child’s care. We have Children’s Mercy specialists who are familiar with CF care in the following areas:
• Hepatology (Liver Care)
• Otolaryngology (Ear, Nose, and Throat)
• Gastroenterology (GI)
• Psychology and Psychiatry
• Infectious Disease
Endocrine combined clinic
We partner with our Endocrinology team in a monthly “combination” clinic in which the CF team and the Endocrine team collaborate during one clinic visit. This allows your family to see the CF and Endocrine team both during one appointment.
This increases the collaboration between the CF and Endocrine teams and may ease the burden on your family by reducing the number of appointments and related travel to Children’s Mercy.
We also offer an annual education day for family members and caregivers of children with CF. This event provides the opportunity to hear from both local and national experts in CF care. It also allows for networking with others in the CF community.
Family members and caregivers of children with CF are encouraged to attend. Adolescents and young adults with CF are encouraged to participate remotely using our telecommunication platforms.