Hello all, new here though not new to the CF scene. I have two sons age 11 and 8 with CF. Our clinic just informed me that my oldest is colonized with pseudomonous. We have been on alternating Cayston / TOBI for a year. What does this mean for his outlook? What are your experiences with colonization? Many thanks for any info or advice in advance!
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What does colonization mean for preteen?
- Thread starter BlackRose
- Start date
I've had pseudo for so many years, I can't remember a time when I didn't culture it. For the most part, the inhaled antibiotics work for me. I tend to need two tune ups a year for pseudo infection. The "nice" thing about pseudo for me is that it's a slow infection. I can tell weeks in advance that my infection is flaring and the docs and I are able to start working on it early.
From what I've read the bacteria in a colony have a better defense structure and while individual germs may not be resistant to antibiotics, the biomass they form protects the colony at large. I posted a link the other day about a new research drug that is supposed to break up that colony but for today, it probably means your oldest son will carry pseudo all the time. Now what this means to his individual health is tougher to say. Research shows worse outcomes for patients with pseudo colonies. However I've been colonized since my teens and been able to maintain lung function more or less. My brothers also have had pseudo for years (decade) and have lost some function but still manage to live a very nice life (college, careers, wife and kids, volunteer work, etc) despite a few inopportune hospitalizations. I hope your sons get the same "luck" my family has had.
Similarly to what the others have said, I don't remember ever not culturing pseudo. Sometimes the different strains (mucous vs. non-mucoid) can cause more trouble but there's not really a way to predict how your son will do. I do inhaled tobra every other month and have been on that for years. I'm doing pretty well. Lung function between 55 and 60% on average. It seems to be something that happens to the majority of CFers at some point in their lives.
JustaCFmom
New member
(L)I can't answer much about chronic PA, but my daughter is finishing her 3rd month of Tobi with the "eradication protocol". I think her last culture was negative & I hope she will be all clear for a while. I thought I had seen some people here who actually managed to get rid of it, but I don't know for sure.
My son had PA when he was first diagnosed & he hasn't had it since we did the 3 months of Tobi with Cipro (knock on wood) 3 years ago.
I don't know how often you go to clinic there, but we go every 4-6 weeks. In theory, any bugs should get picked up & knocked out pretty quickly.
Is there no way the IV antibiotics, etc can kill out the PA? I so feel for you!! I worry about my kids all the time. I am very relieved my son didn't get the PA from his big sister.
Good luck and, yes, there is life after Pseudomonas.
My son had PA when he was first diagnosed & he hasn't had it since we did the 3 months of Tobi with Cipro (knock on wood) 3 years ago.
I don't know how often you go to clinic there, but we go every 4-6 weeks. In theory, any bugs should get picked up & knocked out pretty quickly.
Is there no way the IV antibiotics, etc can kill out the PA? I so feel for you!! I worry about my kids all the time. I am very relieved my son didn't get the PA from his big sister.
Good luck and, yes, there is life after Pseudomonas.
D
daniela.l
Guest
I've had pseudomonas for maybe about 10 years (had, just got a transplant!). These are VERY resistant to many medications. If one antibiotic works, it quickly becomes resistant. Eventually, doctors just run out of antibiotics to give for the pseudomonas. A doctor once told me that the pseudomonas cannot be cleared completely, the antibiotics can only do so much to minimized the colonization. This was my experience, but I also cultured MRSA so maybe that's why many antibiotics were resistant to my bacterias.Make sure your kids exercise and drink lots of water so the mucus doesn't become sticky! Best of luck!
daniela, 18
catchingyourbreaths.wordpress.com
daniela, 18
catchingyourbreaths.wordpress.com