September 24, 2020 ~
The new edition of the CF Newsletter "The PEP Talk" is now online!
- Fall 2020 -
This edition of the newsletter includes information on:
- Clinic Staff Changes
- CF & COVID-19 Resources
- COVID Testing at BCCH
- Research Team Update
- Current Clinic Changes
May 28, 2020 ~
Due to recent guideline changes made by the BC Center for Disease Control regarding COVID 19 testing, we at the clinic are also updating our recommendations.
Screening, Self-Isolating, and Testing for COVID-19
As of April 28, 2020, BC Center for Disease Control is now recommending anyone experiencing mild respiratory symptoms get tested for COVID 19 at their local COVID 19 testing location. For more information please refer to BC self assessment tool . This link will also provide you with your nearest COVID 19 testing site. Please also call the clinic to update us on the status of your child and family. The CF nurses will continue to offer telephone support to families from Mon-Fri: 8:00-4:00.
At this time, recommendations for screening, self-isolating and COVID-19 testing are the same for individuals with CF as the general public.
Treatment of COVID-19
Public Health will notify individuals with their testing results and provide them with further instructions if required. The CF clinic will follow up with your child's progress once parents have informed us of the results. In many ways we are managing the COVID-19 infection like any other viral infection. We continue to recommend frequent hand washing, avoid exposure to anyone who is sick, and social distancing.
Return to School and/or Daycare:
The CF Clinic recommends that children with CF delay their return to school or daycare for 2 weeks, after which time:
- parents can request informal feedback regarding the school/ daycare's ability to implement CDC guidelines re physicial distancing and other infection control measures
- we will learn if there is a spike in COVID-19 cases, and whether they are tied to schools or daycares
Note that this is at parents' discretion.
Home Respiratory Samples
With the postponement of many in person visits, we've recently started home respiratory sample collection. If your child develops a wet cough or is due for a routine culture, the CF physician may ask for a sputum sample or cough swab to be collected at home. A collection kit will be sent to your home along with instructions and a virtual visit with physio will be arranged for the collection.
Please contact us if you have any questions.
CF Canada: Cystic Fibrosis and COVID-19 - Ask the Experts
April 27, 2020 ~
Dear CF Families,
CF Canada has updated their webpage to include videos of their "Ask the Experts" Q & A webseries. You may find the information and videos HERE.
Mental Health and Wellness Amidst COVID-19
April 27, 2020 ~
New counselling service for post-secondary students
- The B.C. government, through the Ministry of Advanced Education, Skills and Training, today announced Here2Talk, a new mental health counselling and referral service for post-secondary students.
- The service offers confidential, free single-session services by app, phone or online chat, 24 hours a day, seven days a week.
- Chat sessions with a trained counsellor can be accessed by downloading the Here2Talk app, visiting here2talk.ca, or by calling 1-877-857-3397.
Moderated Online Platform for Youth (10-18years) with Chronic Illness to Connect
Self-Assessment and Resources for Caregivers
- Wellness Together Canada: Mental Health and Substance Use Support. Wellness Together Canada provides free online resources, tools, apps and connections to trained volunteers and qualified mental health professionals when needed. These include modules for addressing low mood, worry, substance use, social isolation and relationship issues.
- Here's the link: https://ca.portal.gs/?lang=en-ca
Story Books and Resources
Supporting Kids through the COVID-19 Crisis
Guide to Living With Worry And Anxiety Amidst Global Uncertainty (for adults)
Cystic Fibrosis and COVID-19
CF Clinics Temporarily Closed for Non-Urgent Visits
Updated April 15, 2020 ~
Dear CF Families,
Due to ongoing concerns with the spread of COVID-19, the provincial health authorities of B.C. have asked that we limit outpatient visits to medically urgent cases only.
To help ensure the health and safety of our patients and their families, CF clinics for the rest of April and the first 2 weeks of May have been cancelled.
We will contact each family who had appointments booked between now and May 18, 2020 to arrange either a telephone\teleconference follow-up in place of their visit or a routine follow-up for later on in the year.
In the meantime, please do not hesitate to contact our office should your child become unwell in the interim.
Many thanks and take care.
The BCCH Cystic Fibrosis Clinic Team
CF Clinics COVID-19 Update
March 27, 2020
Dear CF Families,
As promised, we are updating our original letter sent March 20, 2020. Please see 3 new bullet updates from March 27, 2020:
Do I need to stop working in order to protect my child with CF from getting COVID-19?
At this time, your CF Clinic does not recommend that all parents of children with CF need to stop working in order to protect their child's health. There will be some exceptions to this and we are assessing this on a case by case basis.
Are there financial supports to help families at this time?
Yes, there are provincial and federal benefits that have been put in place to support families in a variety of situations; these are being updated frequently- the most updated information should be outlined in the links below.
- The new Canada Emergency Response Benefit
This is for caregivers staying home to care for your children due to school or daycare closure. It provides a taxable benefit of $2,000 a month for up to 4 months to working parents who must stay home without pay to care for children that are sick or need additional care because of school and daycare closures [LINK]
- COVID-19 Provincial Support and Information
The BC Emergency Benefit for Workers provides a one-time $1,000 payment for people who lost income. [LINK]
You can find information on the link below outlining the
- Temporary rent supplements, halting evictions and freezing rents.
- BC Hydro & ICBC- deferred payments
- 'How to' Personally prepare for staying home
- BC Emergency Benefit and much more
- Are there supports for my/ my child's emotional wellness?
Supporting Kids through the COVID-19 Crisis [LINK]
Moderated Online Platform for Youth (10-18years) with Chronic Illness to Connect [LINK]
Guide to Living With Worry And Anxiety Amidst Global Uncertainty (for adults) [LINK]
Cystic Fibrosis and COVID-19 [LINK]
Many of you should have received a letter to your e-mail regarding frequently asked questions in regards to cystic fibrosis and the current COVID-19 outbreak. This letter may be viewed here. [LINK]
This letter will continue to be updated as new information is released.
Updated March 13, 2020 ~
Dear CF Families,
With the evolving situation regarding the current novel coronavirus (COVID-19) outbreak, the best way to keep up to date on the situation is to follow the websites below.
BC Centre for Disease Control
Government of Canada
BC Children's Hospital Guide to Covid-19 and Patients *NEW*
Currently there are no CF-specific recommendations from CF Canada. Please continue with routine CF infection control practices.
March 5, 2020 ~
CF Canada has updated their website regarding COVID-19.
Please follow the link below.
CF Canada Update on Covid-19
February 18, 2020 ~
The new edition of the CF Newsletter "The PEP Talk" is now online!
- Winter 2020 - Long-time clinic nurse Shelagh Jenkins is retiring! Also included is an introduction to new clinic nurse Dorothy "Dot" Chow. Other topics include news on research, novel coronavirus, medication refills 101, mental health resources and a recipe from the kitchen of dietician Alex!
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 Efow 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 BCCH Physiotherapy Department.
- If equipment is purchased from the BCCH PT department, it will be a final sale. If there are problems with the equipment after it is purchased, the BCCH PT department will be unable to assist.
Please contact Melissa or Nicole directly if you have questions or require further clarification.
Melissa & Nicole
CF Clinic Physiotherapists
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 BCCH 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.
Dr M.A. Chilvers
Director, Cystic Fibrosis Clinic
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.
Tami Kolb (Social Worker)
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.
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)
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.
BCCH CF Clinic
**Update November 19, 2018**
Thank you to all the families that participated. Your feedback is greatly appreciated!
October 3, 2018 ~
Dear BCCH 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.
We look forward to hearing from you!
- BCCH CF Clinic -
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!
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
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 HealthLinkBC 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.
- Keep up to date on the local air quality status in your area. A link to the Air Quality Health Index (AQHI) can be found here. The AQHI is based on the number of smoke particles found in the air at a particular location.
- 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.
- 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.
- 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.
- 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)
Paediatric 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
- 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.
- Fall 2018: Back to School Lunch Tips, Staff Changes
- Winter 2018 - Tips for Tax Season, CanACT, NACFC Research Report, Clinic Letter Survey Results and more!
- Spring 2019 - Staffing Changes, Spring Break Travel Tips, Patient Journey Mapping Experience, a review of the novel "Five Feet Apart", Fun with Enzymes Wordsearch and A Patient's Wish Experience.
- Fall 2019 - Peer to Peer Survey Results, Research News detailing the new Triple Combination Study and Fun Apps for Kids.