November 28, 2019 ~

Dear Patients and Families,

We are writing to you to clarify the purchasing and maintenance of the eFlow Rapid Nebulizer.

The eFlow Rapid Nebulizer is a nebulizer that is used for inhaled medications.

We are aware that not all patients are using an eFlow, but wanted to ensure the correct information is being shared amongst all families.

There are 2 options we offer for purchasing eFlow equipment:

1. Patients and families may purchase equipment directly from a vendor.

• A vendor may be better equipped to deal with equipment failures should they arise.
• A vendor may be able to provide a warranty on the equipment.

2. Patients and families may continue to purchase eFlow equipment from the BC Children's Hospital Physiotherapy Department.

• If equipment is purchased from the BC Children's physiotherapy department, it will be a final sale. If there are problems with the equipment after it is purchased, the BC Children's physiotherapy department will be unable to assist.

Please contact Melissa or Nicole directly if you have questions or require further clarification.

Thank you,

Melissa & Nicole

CF Clinic Physiotherapists

604-875-2146

To: Parents and Families of Children with Cystic Fibrosis

RE: Influenza Vaccine 2019/20

This is to inform you that the influenza vaccine is now available at the Family Immunization Clinic at BC Children's Hospital, and at many pharmacies, public health units and doctors' offices. It is recommended by Cystic Fibrosis Canada's Health Care Advisory Board and the Canadian National Advisory Committee on Immunization that all individuals with CF over the age of 6 months receive influenza vaccine each year.

It is also recommended that household contacts of people in a high-risk group (such as CF) receive the vaccine. The best prevention is obtained by having the immunization as early as possible.

For 2019/20, there is NO nasal spray form ("Flumist") of influenza vaccine available in Canada. There is only intramuscular (needle) available, as follows:

• 2 types of "quadrivalent" vaccines (covers 4 strains of influenza, so is preferred): 'Fluzone' and 'Flulaval Tetra', and
• 2 "trivalent" vaccines (covers 3 strains, acceptable if the quadrivalent not available): 'Fluviral' and 'Agriflu'.

While a quadrivalent vaccine is preferable for children (6 months- 17 years), any of the above vaccines are acceptable for individuals with CF.

Note: anyone receiving flu vaccine for the first time will need two doses at least 4 weeks apart.

You are asked to contact your family physician or local pharmacy/ public health unit to make arrangements for your child and family. If you prefer, there is a Family Immunization Clinic at Bc Children's in the Ambulatory Care Building serving patients, families, and their visitors running Monday to Friday 8:30am – 5:00pm for drop-in or appointments (604-875-3000): http://www.bcchildrens.ca/our-services/clinics/family-immunization.

If you believe your child has symptoms of the flu please contact the CF clinic as if identified within the first 48 hours they may be eligible for Tamiflu.

Yours Sincerely,
Dr M.A. Chilvers
Director, Cystic Fibrosis Clinic

A Message from Tami Kolb

March 20, 2019 ~

Dear families,

It is with mixed emotions that I am announcing my retirement. I have worked at the hospital for over 29 years, the last 8½ working at the Cystic Fibrosis and Biochemical Diseases Clinics. The progression of medicine and technology over the years has been incredible. I feel fortunate to have worked with so many wonderful families, witnessed the resiliency of individuals, had the opportunity to watch children grow into incredible adults, been able to support families during challenging times and have had the opportunity to be part of celebrations. I am grateful for the wonderful and enriching experiences and wish you all the very best in the future.

Sincerely,

Tami Kolb (Social Worker)

Sexual and Reproductive Health Guides for Young Women with CF

January 9, 2019 ~

The Boston CF Center and Center for Young Women's Health at Boston Children's Hospital would like to share their newly developed sexual and reproductive health guides for young women with CF.

This 12-guide series was developed in partnership with patients, parents, members of the multidisciplinary CF team, and adolescent medicine specialists. The guides are freely accessible online and can also be printed out for patients and families. They are written specifically for adolescent and young adult women with CF.

https://youngwomenshealth.org/cystic-fibrosis-all-guides/

2018 Flu Vaccination Recommendations

September 25, 2018 ~

Flu season is fast approaching! Please refer to the below letter for this year's flu vaccination recommendations for our CF patients.

2018 Flu Vaccination Letter (PDF)

Product Recall

October 16, 2018 ~

Dear CF Families,

News came out this morning that Abbott Canada, the company that manufactures Pediasure, Pediasure Plus, Ensure and Suplena has recalled various liquid oral nutrition supplements due to potential bacterial contamination.

The recall only affects products in METAL tins with a product code and UPC # that matches the ones listed on the Canadian Food Inspection Agency's website.

Abbott products in a plastic bottle are not affected.

If you have any questions, please give the clinic a call at 604-875-2146.

Thanks,
BCCH CF Clinic

Patient Journey Mapping (Closed)

**Update November 19, 2018**

Thank you to all the families that participated. Your feedback is greatly appreciated!

October 3, 2018 ~

Dear BC Children's CF families,

You are being invited to participate in a Patient Journey Mapping session.

The Patient Journey Mapping session will map out the services and care you received from the Cystic Fibrosis (CF) Clinic at BC Children’s Hospital. This will help us learn what worked well and what can be improved. We are specifically interested in understanding the time in between clinic visits. Please see below for all the information.

• BC Children's CF Clinic Patient Journey Mapping Invitation (PDF)
• BC Children's CF Clinic Patient Journey Mapping Info Sheet (PDF)

We look forward to hearing from you!

- BC Children's CF Clinic -

A Message from Maggie McIlwaine

September 24, 2018 ~

Dear CF Clinic,

I wanted to take this opportunity to let everyone know that after working for 37 years with BC Children’s Hospital Cystic Fibrosis Clinic, I am retiring (well not really). I feel very privileged to have had the opportunity to work with each of our CF families over the years and to see so many changes in the healthcare of children with CF. It is a pleasure for me to watch as our children with CF grow into young adults and achieve their ambitions.

I mentioned that I am not really retiring, that is because I now have a new and exciting position with CF Canada. CF Canada is launching a Clinical Trials Network to give more people with CF the opportunity to take part in clinical studies which will benefit the whole CF community. I am heading up this Network as the Network Manager. This is an exciting opportunity and one which we will keep you all updated on as we want patient participation in both designing studies and taking part in these studies. Even though I work for CF Canada, I am still based at BC Children’s Hospital so will be around to say hello.

If you want any further information on clinical trials we will be setting up a website page on the CF Canada website.

Thank you all, once again for allowing me to be part of your CF family!

- Maggie McIlwaine

Back to School Lunch Tips

September 24, 2018 ~

For many children heading back to school in the fall, eating enough at lunch can be challenging within the amount of time given and on top of other factors such as distractions or finding school-friendly lunch ideas your child likes to eat. A couple tips to help your child with eating lunch at school:

• Discuss with your child’s school if they are able to support your child with their lunch such as allowing extra time for your child to finish lunch or leave class a few minutes early to wash hands and take their CF medications.
• To help spark their interest in eating their lunch, see if your child is able to participate in preparing and/or packing their lunch.
• Lunches can also include breakfast foods such as pancakes/waffles or leftovers from dinner. If your child is tired of sandwiches, try using a cookie cutter to create a shape or changing the bread to bagels, croissants, English muffins, pita bread.

To keep foods hot in a thermos, try adding boiling water to the thermos for a few minutes, then drain water before adding hot food.

• For more lunch ideas, visit Chef4cf or see our list of packed lunches (including nut-free) (PDF).
• For additional tips on back to school, visit CF Canada’s school toolkit.

BC Wildfires & Air Quality

August 16, 2018 ~

This summer, wildfires in BC are again posing significant health, social and financial challenges to the population of our province. Northern BC and the Interior have again been especially affected. People with CF or other respiratory conditions are at risk of respiratory complications secondary to smoke exposure, including increased cough, wheeze or shortness of breath. These symptoms are triggered by the inhalation of smoke particles. Information about the health impacts of wildfires can be found on the HealthLink BC website.

While ultimately, nothing but the resolution of this natural disaster will completely remove this risk, there are some steps that you can take to reduce its impact on your or your child's health.

1. Keep up to date on the local air quality status in your area. See a link to the Air Quality Health Index (AQHI). The AQHI is based on the number of smoke particles found in the air at a particular location.
2. Environment Canada has issued activity level recommendations based on the AQHI. Those recommendations are listed in the image below. In brief, if the AQHI is 7 or above, children with CF should reduce strenuous outdoor activity, especially if they are symptomatic.
   
   
3. On days where the AQHI is elevated, spend time in buildings where there is air conditioning (ideally air conditioning with HEPA particle filtration). If you do not have air conditioning at home, public places like malls, community centres or movie theatres are good options.
4. If you are experiencing increased respiratory symptoms, Ventolin (if you have a prescription) can be useful. However, if the symptoms are pronounced or not responding the Ventolin, please contact the CF Clinic, your local family physician or Emergency Department.
5. There is no evidence that commercially available masks effectively filter the tiny smoke particles that deposit into the lungs and are likely not effective.
   

Dr. Jonathan Rayment, MDCM MSc FRCP(C)
Pediatric Respirologist, BC Children's Hospital
Investigator, BC Children's Hospital Research Institute
Clinical Assistant Professor, University of British Columbia

Emotional Wellness Update

July 16, 2018 ~

Emotional wellness screening (EWS) is now a standard of care for cystic fibrosis clinics.

We recently evaluated our one year experience of EWS.

We captured 82% of our CF youth (12 years and older) and 92% of parents of CF infants (0-2 years).

Families felt …

• Positive about the focus on mental health
• Uncertainty about how EWS enhances their CF care
• A lack of support and resources for mental health

Looking forward

• With support from a one-time government grant, we have hired Roma Palmer, a registered clinical counsellor to complete EWS and offer up to 5 sessions of counselling and cognitive behavioural therapy for CF parents of children ages 3-12 years.
• To learn more about Roma, please visit her website.