Cystic Fibrosis Program
What to Expect
Epic, Our New Electronic Health Record, Launched October 3
We are excited to launch Epic, our new electronic health record! You may notice us doing things differently, such as using more electronic devices and less paper. As always, your safety is our highest priority and we are here to answer any questions you may have.
If you have an upcoming appointment:
- Make sure to be at the registration desk no later than 15 minutes before your appointment. This may mean that you need to arrive at the clinic location 20–25 minutes before the appointment, so you can complete parking and entrance procedures before registration. This will help us ensure that your visit can begin on time.
- Bring your current medication list so we can check our records carefully and make sure everything is correct.
COVID-19: What to Expect for Your Child’s Safety at In-Person Appointments
We’ve made a lot of changes to our facilities to protect our patients, families and staff from covid-19. Every patient is allowed to have a maximum of one parent or caregiver accompany them. Everyone else, including siblings of any age, may not come along. When you come for your appointment, you will see that we’re requiring everyone to wear masks at all times, cleaning check-in and registration desks between visits, screening for symptoms at all entrances and have set up our spaces to encourage social distancing. Watch what to expect at your clinic visit during your COVID-19 (video). Learn more about the rest of the safety measures we have in place.
Your child has been referred to the Cystic Fibrosis Program because they have been diagnosed with cystic fibrosis (CF). In our program, we monitor your child’s symptoms, recommend the latest treatments and provide education so your child can grow up as healthy and active as possible.
A CF clinic visit usually takes between 1 and 3 hours. While this seems like a long visit, it gives your family a chance to meet with many of our CF team members.
If your child is new to Seattle Children’s, please bring (if appropriate):
- Clinic notes or reports.
- Test results, including blood work, sweat test results and/or genetic testing results.
- Your child’s medicines or a list of medicines. Include non-prescription items like vitamins. Include name, dose and instructions.
- Your child’s medical equipment.
- Any forms that might need to be signed by our providers, like school forms.
- Actual X-rays or X-rays on a CD.
If your child is older than 1, we recommend that you schedule 1 clinic visit every 3 months. If your child is younger than 1, we recommend they are seen in our clinic every 1 to 2 months.
Call our scheduling team at 206-987-2024, option 1.
- Find your location in our map and directions section.
- Arrive 15 minutes before your appointment to allow time for registration.
Preparing your child
For more information on visiting Seattle Children's clinics, please see Your Child's Clinic Visit.
Preparing for a Hospital Stay
- Find out what you need to know about your child's hospital stay, including what you should know if your child requires a hospital stay for a CF lung exacerbation (PDF).
- Learn about main campus amenities.