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Cystic Fibrosis

We diagnose and care for infants, children, adolescents and their families who are affected by cystic fibrosis.
Clinic News

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

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 -

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)

The PEP Talk - Fall 2018 Edition

We are happy to introduce our quarterly newsletter "The PEP Talk"!

  • Fall 2018: Back to School Lunch Tips, Staff Changes

These newsletters will be archived on the bottom of this page for future reference.

ARCHIVED NEWS

A Message from Maggie McIlwaine


September 24, 2018 ~

Maggie.jpg

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

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 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.

  1. 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.

  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.
    AQI.png
  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)
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  

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.

About

PURPOSE OF THE CF CLINIC

  • To assess and care for children from birth through 18 years old with a possible or confirmed diagnosis of CF, in cooperation with caregivers, family physicians and paediatricians. 

  • To promote optimal health and quality of life for children with CF by empowering families of younger children to care for their child independently through education and skill development and fostering a gradual independence of youth through developmentally-based transition care to ensure a seamless transfer to the adult healthcare system. 

  • To be a centre of excellence and leadership in CF care, by meeting and exceeding CF Canada's standards of care.

  • To foster research of potential benefit to patients with CF and to their families.

  • To teach medical students, interns, residents and allied health students about the care of children with CF.

CLINIC CONTACTS

Main Line: 604-875-2146
CF Nurses' Line: 604-875-2345 Local 7005
CF Newborn Screening Nurses' Line: 604-875-2623
Physiotherapist's & Dietician's Line: 604-875-2345 Local 7602
Social Work: 604-875-2345 Local 7013

Clinic E-Mail: cfclinic@cw.bc.ca

For urgent medical matters only, please call 604-875-2161 and have the on-call CF physician paged.


Clinic Staff

Physicians

Dr. Mark Chilvers, MBCh, BSc, MD, MRCPCH
Clinic Director, Pediatric Respirologist

Dr. Connie Yang, MSc, MD
Pediatric Respirologist

Dr. Jonathan Rayment, MSc, MD, FRCP(C)
Pediatric Respirologist

Dr. Kelly Luu, MD, FRCP(C)
Pediatrician & Clinical Associate

Nurses

Anna Gravelle, RN, MSN
Nurse Clinician

Shelagh Jenkins, RN
Clinic Nurse

Vanessa McMahon, RN, BSN
Nurse Clinician - Newborn Screening

Caroline Burgess - RN, MSN
Clinic Nurse - Newborn Screening

Physiotherapists

Nicole Lee-Son, Bsc, PT
Clinic Physiotherapist

Melissa Richmond, PT
Clinic Physiotherapist

Julie Fairbairn, PT
Physiotherapist (Inpatients)

Allied Health

Christine Loong, RD
Clinic Dietician

Eva Cho, Bsc (Pharm), ACPR
Clinical Pharmacist

Tami Kolb, MSW, RSW
Social Worker, Cystic Fibrosis & Biochemical Diseases Clinics

Dr. Patrice Dunn
Clinic Psychiatrist

Research Coordinators

Alam Lakhani
Delphine Czuba
Rodrigo Sandoval

Administration

Jon De Guzman
Clinic Clerk

Louise Aromin
Administration / Finance

Clinic Fellows 2018-2019

Dr. Julie Duncan
Dr. Ajay Kavat


 


 

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