Cystic Fibrosis Program

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

Recommendations:

• 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.

Further concerns:

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.

Future updates:

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. 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.

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.

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.

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.

Hospitalizations:

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.

Additional Resources:

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:

Cystic Fibrosis Foundation: COVID-19 Community Questions and Answers
CDC: Coronavirus (COVID-19) Resources