Cystic fibrosis (CF) is a genetic condition that affects a child’s lungs and digestive tract. This can lead to problems with nutrition and growth. The Cystic Fibrosis Program at Riley at IU Health is highly experienced in working with children and families living with cystic fibrosis.
Coronavirus (COVID-19) Update for our Patients in the Cystic Fibrosis Program
Coronavirus (COVID-19) Update for our Patients in the Cystic Fibrosis Program
Events surrounding the coronavirus (COVID-19) situation are continually changing and much remains unknown. However, we want to provide you with the most current status of things at the Cystic Fibrosis Program at Riley Children’s Health.
Back to School 2020 - Riley Cystic Fibrosis Guidelines
Our Commitment To Your Child
The Riley at IU Health Cystic Fibrosis care team will provide the best care possible to your child with the current information available at the time. While we continue to look for the best answers to your questions, some information may not yet be known. We also understand each of your circumstances may be different, and we want to provide your family with the following guiding principles:
What we currently know:
- Covid-19 is spread most easily when individuals are close (less than 6 feet apart) to each other.
- COVID-19 infection rates have been gradually decreasing in Indiana.
- Communities have been impacted differently; therefore recommendations from your local health departments and school boards may vary.
- While we believe that COVID-19 generally does not affect children as severely as adults, we remain concerned that COVID-19 infections may cause more problems for a child with CF.
- There are emotional and/or mental health related consequences to indefinitely isolating children from school and their peers.
What we don't yet know:
- What the COVID-19 infection rate will look like in your area when your child returns to school
- The details of what your child’s school day will look like
- How government and CF Foundation guidelines will change over time. We may have to change our recommendations In the future.
- How school transportation will be affected
- How sporting events, activities, and other extra-curricular events will be organized
- Avoid large gatherings or situations where there is close contact between groups of people
- Encourage regular hand washing or sanitization and regular cleaning of frequently touched surfaces.
- Avoid unnecessary travel
- Follow your local government or school guidelines
- Follow school district recommendations with respect to wearing a mask. (If your school is wearing masks, we recommend your child wear a mask). This may be difficult especially in pre-school and elementary school aged children.
- Avoid water fountains and take a personalized water bottle to school
Please understand that changes in COVID-19 infections in your community or school could result in the need to withdraw your child from school.
If you are uncomfortable with the idea of sending your child to school, and would like to discuss other options, please contact your child's CF care team.
On June 5th, the Indiana Department of Education announced Covid-19 Re-Entry Considerations. Indiana’s Considerations for Learning and Safe Schools (IN-CLASS) document was developed in partnership with the Governor’s office, the Indiana State Department of Health, the Indiana Family and Social Services Administration, the Indiana High School Athletic Association and IDOE’s Re-entry Advisory Group, which is comprised of practitioners and professional organizations.
Topics addressed in the document include school operations, health protocols, social distancing, extra-curricular and co-curricular re-entry, special education, transportation, and mitigation strategy recommendations. The document will require continual revisions by the Indiana Department of Education, and can be accessed here. Please note that this document is a guide and may differ from the policies of your local school corporation.
We anticipate that these recommendations will change as new information becomes available. Please check back to see the most recent recommendations from our team.
Update on Virtual Visit Process - June 7, 2020
We have been working on continuously improving our virtual visits and would like to update you on our current system. We are using Zoom Health as our virtual visit platform. Zoom Health is an encrypted, secure, HIPAA-compliant system that allows multiple people to be in the meeting at the same time.
The week before your child’s visit, a member of our office staff will contact you and send you an invitation with the Zoom link. On the day of your virtual visit, please click on the link 10 minutes before your appointment. When you join the Zoom, you will be in a virtual “waiting room.” Please wait until one of our CF nurses places you in your own personal meeting room. Your child’s CF doctor and other members of the CF team will then join you in the room for the visit. When you are done with the visit, you can then exit the meeting.
We have been using this system for the last 2 weeks and found it has worked extremely well. It has maintained patient privacy while allowing all our CF team members to work with our patients with CF. If you have any other questions regarding this system, please call our office at 317.948.7208. We are committed to providing the best possible care during this challenging time. We will continue to work on improving all aspects of how we provide care to our patients with CF and their families and will provide updates on a regular basis.
Update on Appointments - April 28, 2020
With the current COVID-19 situation, we are minimizing in-person appointments. We are still seeing some patients who had low lung function at their last visit or if there are concerns about their health right now. For everyone else, we have been transitioning to video or phone visits. We wanted to share with you what to expect at this time:
- 1-2 weeks before your child’s appointment, a member of our Pediatric Pulmonology and CF office staff will call you to offer you the option of a video or phone visit. If you feel your child is sick and needs to be seen, they will schedule an in-person appointment. One of the CF nurses will call you if your child’s CF physician feels your child should come in.
- If you are not doing an in-person visit, the schedulers will ask for either your email address to send you a link for a video visit or the best phone number for a phone visit.
- The video system we are using is Zoom. You will get an email with the link to the Zoom meeting for your child’s video visit.
- At the time of your child’s visit please log into the Zoom meeting. Your child’s physician will log on at the same time. If he or she is running behind, the CF nurse will contact you and you may see one of our CF team members first.
- Other team members may be on the Zoom during your child’s visit with the physician, and they will speak with you after your child’s physician is done.
The situation with COVID-19 is continually changing, and we will provide updates as quickly and frequently as possible. If you have any questions about your child’s care, please contact us through MyIUHealth or by calling us at 317.948.7208.
Appointments - March 25, 2020
To limit both the risk to our patients of acquiring COVID-19 and the potential transmission of COVID-19 by asymptomatic carriers, we are restricting office visits to only those patients who have important reasons to be seen by the doctor. Some of these reasons could be that the patient is sick or was sick at the last visit, a new medication was started, their lung function was decreased at the last visit, or their caregivers feel it is important for the doctor to see their child with CF. For patients who are not seen in our office, the doctor will call you.
The week before your child’s visit, you will receive a phone call from the CF program asking if you would still like to keep your appointment or if the doctor still wants to see you. If a phone call is most appropriate, your appointment will be changed to a phone call on the same day and time by the doctor to check in with you.
If you do come to our office, we will follow the Riley Hospital COVID-19 policies, which limits the number of people who can be with the child to just one caregiver. Both you and your child will be asked some questions about COVID-19 symptoms and you or your child may have your temperature taken.
If you are seen in our office, CF team members other than the doctor will not be entering exam rooms unless absolutely necessary. This is both to reduce the risk of transmitting COVID-19 as well as to conserve infection prevention materials such as gowns and masks. For both in-person visits as well as phone calls, all the CF team members will be available for follow up by phone.
During this current situation, we are suspending obtaining cultures unless absolutely necessary.
Similarly, we will not be drawing blood for birthday visit labs or other tests unless absolutely necessary.
Currently we are using telephone calls as a substitute for actual visits, but we are working on establishing a method to securely do video chats as well. Our schedulers will let you know about this option when it is available when they call you.
Lung Function Tests (PFTs):
At this time, we are still doing PFTs for people with CF who come to our office. Even before the COVID-19 crisis we have been using CF Foundation Infection Prevention and Control Guidelines, which are designed to prevent droplet and contact transmission of many germs, including COVID-19. These guidelines include continually filtering and changing the air in the PFT lab, wiping down all surfaces with a cleaner that kills germs, and having people with CF wear masks before and after testing.
All patients with suspected or known COVID-19 are now being admitted to a single unit on 7 West.
While they are there, their care will be managed by a doctor from Pediatric Hospital Medicine (PHM). Our pulmonary/CF doctors will be in touch daily with this doctor, but they will not be coming into the room to see your child. We now have testing for COVID-19 available in the hospital, so if the test comes back negative, your child can be moved up to 8 West. If your child does have COVID-19, they will be kept on 7 West and a pulmonary/CF doctor will see them every day and communicate with the PHM doctor every day.
What can you do?
Most importantly, don’t panic. The CF community is well-equipped to handle this. Because of the focus on infection control and prevention for years, we are well-versed in many of the procedures recommended by the CDC at this time. This includes:
- Supplies and medications. While many of you may not be able to get 90-day supplies of specialty medications, we would recommend refilling as many of your medications as you can to have extra supply on hand. Please answer every phone call that comes in. You don’t want to miss phone calls from pharmacies. If you have questions about getting additional medication supplies, please contact our CF team.
- Take precautions to limit droplet and contact acquisition of COVID-19:
- Indiana is now in a state of lockdown, so you should try to leave your house as little as possible and only to go to essential places, like grocery stores.
- Maintain a distance of at least 6 feet away from people.
- Clean your hands as soon as possible after touching unknown surfaces
- Avoid touching your nose and face as much as possible, especially after contact with an unknown surface.
What should I do if I think I or the child with CF has coronavirus?
To reiterate, the primary symptoms of concern are fever and cough. The suspicion would be higher if there was a known exposure to someone with coronavirus. IU Health has created a free virtual coronavirus screening. If, after screening, you require testing, you will be directed to a location where you can be isolated and tested. For updated information on COVID-19, visit our online resource center.
Coping with COVID-19
We realize that this is a stressful time for many people. In addition to fears of getting sick with COVID-19, many of you may also be feeling worried about your jobs or the future of our economy. Your children may also have fears and stress, even if they are not saying anything to you. We have enclosed some resources for you and your child to use to help maintain wellness during this time. Our psychologist is also available to any children with CF who are feeling stressed or worried about COVID-19.
The COVID-19 situation has led to a flood of information on the internet. However, most of this
information is not filtered and may be wrong or unreliable. We recommend you stick with trusted sources of information:
The bodies of children with CF produce a thick, sticky mucus that clogs the airways in the lungs and leads to serious lung infections. This mucus also affects the esophagus, stomach and intestines which can cause poor nutrition and growth.
Our medical team uses a multidisciplinary approach. Doctors and other medical professionals who work in the Cystic Fibrosis Program are specialists in gastroenterology, pulmonology, nursing, nutrition, respiratory therapy, social work, pharmacy and genetic counseling.
The Cystic Fibrosis Program at Riley at IU Health works with children and families from Indiana as well as other states. The Cystic Fibrosis Center at Riley at IU Health is the only pediatric center accredited by the Cystic Fibrosis Foundation in the state of Indiana and one of 115 care centers in the United States. Treatment of CF continues to advance as the Cystic Fibrosis Program at Riley at IU Health and other centers partner with the Cystic Fibrosis Foundation to improve care and the quality of life for patients.
Many children with CF live well into adulthood—today people with CF are expected to survive to an average age of 38. At Riley at IU Health, we work with children and their families to move the child into an adult program. This planned preparation includes:
- At age 12, the CF team will address all questions directly to the child. Parents can go into the exam room with their child or children.
- By age 14, each child will be seen by his or her healthcare team without the parent. The CF doctor meets with parents to review the plan and answer questions.
- Between the ages of 18 to 20, patients will begin care with the Adult Cystic Fibrosis Program.
At Riley at IU Health, the health results data for our Cystic Fibrosis Program is reported to the public. Data for all CF centers can be found at the Cystic Fibrosis Foundation website. The goal of this effort is to accelerate the quality of care and improve the relationship between patients, families and the care center.
Conditions & Services
We treat most Cystic Fibrosis conditions. Below is more information about some, but not all, of the conditions that we treat.
We offer a number of different Cystic Fibrosis services. Below are some, but not all, of the services that we provide. If you have a question about a specific service that is not listed here, please contact our program.
Services and care provided through the Cystic Fibrosis Program are coordinated through our specialized pediatric gastroenterology and pulmonology doctors.
In addition to our primary hospital location at the Academic Health Center in Indianapolis, IN, we have convenient locations to better serve our communities throughout the state.
Riley Outpatient Center at IU Health
Pediatric Pulmonology & Respiratory Care
575 Riley Hospital Dr
Indianapolis, IN 46202
Program Forms & Resources
Program Forms & Resources
The Cystic Fibrosis Program at Riley at IU Health provides the following forms for parents, healthcare providers and personnel. We have also curated relevant resources from other websites and provided links with brief descriptions of the information that is available.
This handout provides helpful information for parents.
We provide multispecialty care for a number of conditions. Below are links to our related departments.
For Health Professionals
The specialists at the Cystic Fibrosis Program at Riley at IU Health work closely with referring physicians from across Indiana. Program physicians are actively involved in research to find better treatments they can use to care for patients. Our team also plays a role in training medical residents and fellows.
Refer A Patient
Riley at IU Health works with referring physicians in Indiana and beyond.Refer A Patient
The physicians at the Cystic Fibrosis Program at Riley at IU Health serve as faculty who help train medical residents and fellows.