What To Expect
Frequency of Appointments
This is the standard schedule for appointments based on age, but may change based on an individual patient's health status.
Birth to 6 months: Monthly appointments
6 - 12 months: Every 2 months
12 months and up: Every 3 months
18 years or graduated from high school: Transition to adult care
Appointment Types
Annual
Once a year, around your child's birthday, (for siblings we will use the birthday month of the youngest child), you will be asked to schedule an annual CF clinic appointment which will be scheduled at 8 a.m. or 1 p.m. These appointments typically last 4 hours and include the following:
- Pulmonary Function Test (PFT), if age appropriate. Albuterol will be given as part of the testing, so please don't take albuterol if you are scheduled for the 8 a.m. appointment. If prescribed Orkambi, be sure to hold the morning dose until after your PFT.
- Pharmacist - Please remember to bring all of your child's medications in their original containers.
- Provider (physician, nurse practitioner)
- Laboratory testing
- In preparation for lab tests, children are not to take vitamins or other vitamin supplements 24 hours prior to the appointment.
- Children 10 years and older without diabetes should be scheduled in the morning and are to come fasting (nothing but water after midnight) for glucose tolerance testing.
- Children with diabetes will have an HgA1C with their blood draw.
- Chest X-Ray
- Psychologist (when available; time varies)
- Social work annual assessment (20 minutes)
- Dietitian annual assessment (30 minutes)
- Respiratory therapist annual assessment (1 hour) - Please bring in the vest machine including hoses and power cord, vest jacket, and compressor/nebulizer.
- Nurse
Routine
Every 3 months you will be asked to schedule a routine appointment which typically lasts 2 hours and include the following:
- Pulmonary Function Test (PFT), if age appropriate. If prescribed Orkambi, be sure to hold the morning dose until after your PFT.
- Pharmacist
- Provider (physician, nurse practitioner)
- Psychologist (when available; time varies)
- Social work
- Dietitian
- Nurse
Focused
A focused visit is scheduled when your child is sick or requires more frequent follow-up. These appointments typically last 1 hour and includes the following:
- Pulmonary Function Test (PFT), if age appropriate. If prescribed Orkambi, be sure to hold the morning dose until after your PFT.
- Provider (physician, nurse practitioner)
- Nurse
Hospital Follow-Up
These appointments occur after your child is discharged from the hospital and includes the following:
- Pulmonary Function Test (PFT), if age appropriate. If prescribed Orkambi, be sure to hold the morning dose until after your PFT.
- Provider (physician, nurse practitioner)
- Nurse
- Additional team members based on need
Psychology Visit
Individual visits with our CF Psychologist are offered for children and families that are wanting support for emotional or behavioral concerns related to cystic fibrosis. These appointments are offered Tuesday, Wednesday, and Thursday evenings at 5P. These appointments are typically 45 minutes.
Clinic Types
Gastroenterology (GI)
Occurs almost every Tuesday and Thursday morning. During this appointment, your child will see all of the care team members as well as a gastroenterologist for an GI concerns.
Endocrinology
Occurs one Thursday afternoon per month. During this appointment, your child will see all of the care team members as well as an endocrinologist for any concerns related to diabetes.
Baby
Occurs one Wednesday morning per month. This appointment is for children under age 5 who have never grown Pseudomonas Aeruginosa or MRSA on their throat cultures.