A must watch for any CF paediatric parent.
Different doctors give different advice. So do different clinics. There’s no getting around it. We do not have an agreement on modes and models of care from one country to the next or even one clinic to the next.
As parents we can’t avoid the responsibility of making the most informed decisions possible, which is why we all need to seek out information and experiences beyond our own as much as we can. The real reason is not just hearing other doctors speak but also listening to other parents and children with CF. These are the people on the battlegrounds at the forefront of day-to-day care of this disease, just as we are. The CFRI is a terrific organisation that offers loads of resources and they recently had a paediatric conference on “Tools to help your CF child thrive” – this is the first presentation from that series. I’m going to post them one by one with a short summary over the next few weeks.
So here’s a summary of the first session :
What are the things we need to do to keep CF lungs healthy: Tips from a CF researcher who is also the parent of a CF child Continue reading “Keeping CF lungs infection free”
So it’s that time of year again . . As parents of CFers, we dread winter; the colds, the chest infections, the moist cough. How many rounds of antibiotics will they need this season? How bad will the colds get? Sometimes in winter it can feel like they catch one thing after another.
And of course the germ that we all dread most is pseudomonas. For those of you who are just getting your heads around CF, here’s a little background >
The most common bacterium to infect the CF lung is Pseudomonas aeruginosa, a microorganism with a propensity to live in warm, wet environments. The lungs of most children with CF become colonized (inhabited long-term) by P. aeruginosa before their 10th birthday. The body’s response to P. aeruginosa includes inflammation, which causes repeated exacerbations or episodes of intense breathing problems. Although antibiotics can decrease the frequency and duration of these attacks, the bacterium establishes a permanent residence and can never be completely eliminated from the lungs. The treatments for P. aeruginosa lung disease typically involve antibiotics, bronchodilators, anti-inflammatory drugs, and chest physiotherapy to help fight infection and clear the lung passages. While a variety of antibiotics have been used to treat this bacterium in people with CF, improvements in drug delivery systems (such as inhalation) and more effective antibiotics could potentially improve lung function further.
Pseudomonas is bacteria which multiplies in the lungs of people whose immune systems are weakened by illness or medication, or have lung conditions like Cystic Fibrosis (CF).
So where is psuedomonas found?
Typically it’s found in moist environments, soil and on the surfaces of plants and animals. Sources of standing water like pools and the water in flower vases, especially in hospitals, can contain Pseudomonas bacteria.
How can you avoid it?
1. Wash your hands regularly including before and after preparing food, treating wounds, using the toilet, coughing or sneezing into your hands and touching an animal. Good hand washing hygiene is important in preventing the spread of bacteria and viruses. Scrub soap to your hands for 20 seconds before rinsing with warm water.
2. Use an alcohol-based sanitizer to clean your hands when you visit places that are more prone to carry Pseudomonas bacteria. These include hospitals, doctor’s offices, nursing facilities and when you are in contact with people infected with Pseudomonas.
3. Keep your counter tops and other surfaces clean and change standing water every few days, to prevent colonization of Pseudomonas bacteria. In addition, change your hand towels often or use paper towels for drying hands. Dirty hand towels can spread Pseudomonas and other bacteria, especially if someone in your household is sick.
4. Avoid spas and indoor pools.
5. Wash all fruit, vegetables and salads prior to eating.
6. Ensure toys are washed as necessary. Bath and garden toys should be rinsed and allowed to dry after each use. Always wash hands after gardening or playing in the garden.
7. Avoid contact with vases of flowers, fish tanks, greenhouses and indoor garden centres where the atmosphere may be warm and damp.
8. Ensure plastic bottles and containers used for drinking water are sterilized with boiling water before refilling.