Pseudomonas

[AllthebestforLiam]

Hi all,
I am crying as I write this. Our clinic just informed us that Liam has cultured Pseudomonas. We will be admitted on Monday to start two weeks of iv antibiotics, and they will start him on inhaled Tobi. I am devastated. He will be 1 on Tuesday.
Isn't this far too early for him to culture Pseudo? Will this mean he will have respiratory issues very early, is culturing Pseudo really that harmful to his lungs, will he get really sick very early?
Thank you for your experience and advice.. :-(

 

[SadiesMom]

My daughter cultured pseudomonas at about 18 months. She was on tobi and hasn't cultured it since (she's five now). Hopefully the iv antibiotics get rid of it.

 

[jennywotherspoon]

Hi there,
I can understand how worried you must feel. I can share with you that our beautiful daughter, who is about to turn 20 cultured pseudomonas in her pre school years and went straight to hospital for IV treatment and follow up nebulizing of Tobi. She is now 19 and has not cultured pseudo for 2 1/2 years. Yes, it has popped up from time to time and we have treated agressively but a positive culture does not mean your little boy will decline. My daughter still has excellent lung function, is in her second year of a Law/Commerce double degree, goes to the gym, has a supportive boyfriend, rides her horse and lives life to the full. Move forward with his treatment, just take a day at a time and all will be well. Hugs for you from one CF Mum to another.

 

[baseballfrank]

it is not the end of the world. I cultured Pseudomonas 20 years ago and I am still going. I am 53 now. I have to deal with occasional flare ups, but my advice to you is don't panic. Your child will sense that something is wrong and get scared. Just a set back that is going to happen with this disease. Just follow doctors advice.

 

[bkc3]

Hi all,
I am crying as I write this. Our clinic just informed us that Liam has cultured Pseudomonas. We will be admitted on Monday to start two weeks of iv antibiotics, and they will start him on inhaled Tobi. I am devastated. He will be 1 on Tuesday.
Isn't this far too early for him to culture Pseudo? Will this mean he will have respiratory issues very early, is culturing Pseudo really that harmful to his lungs, will he get really sick very early?
Thank you for your experience and advice.. :-(

it is going to be ok. There are many treatment options now to help manage pseudomonas. This is not uncommon, in some cases, this happens right at diagnosis. Not an indicator of respiratory issues to come.
You now know what he has and can care for him better than you could otherwise. He will now be getting what he needs to keep PA at bay. Be vigilant when it comes to PA, you will learn the signs of a flare up and the docs should be able to advise on a how to manage. Sometimes this culture continues, sometimes it comes back clean. Be cautious when they come back clean because it doesn't always mean it is not there.

 

[ymikhale]

my dd cultured PA when she was 15 m/o. We treated with 3 cycles of Tobi and it was gone. Then it came back a year later and we got rid of it again. She hasn't cultured for 3 years now (touch wood)

 

[zaj1139]

Hi, My grandson has cultured x3, last time was around Memorial Day and was his first hospitalization in almost 5 years. He was there for 2 1/2 weeks - tune up's can last from 2-4 weeks, but if he is in the hospital - believe it to be a good thing as they are right where they need to be and will feel so much better afterwards. This last hospitalization he received his G-Tube.

 

[LittleLab4CF]

I believe that P.a., Steno and other mucoid an therefore highly resistant bacterial infections are on the way out. A contributor referenced a research paper that quantified several aspects of mucoid bacterial colonies, the work done on biofilm resistance to date and how much this research has grown.

That's the good news. Biofilm research papers and new research grants have increased exponentially, an enormous amount of resources is now devoted to biofilm research. Granted, a fair amount of biofilm studies are devoted to making biofilm scaffolding to generate new organs. Considering how wonderful it would be to be growing or regrowing lungs and such, we win either way.

Our lungs treat resistant bacterial colonies by building a type of cocoon or chrysalis around them, ideally cutting off any nutrient supply. When TB was incurable the first time, before antibiotics, this resistant bacteria was walled off and walled off by chrysali that their lungs seemed to be consumed, hence TB's other name, consumption.

I am convinced that Kalydeco like genetic drugs will soon end CF. This leaves a clean up task of eradicating all the MDR bugs we have.

Have faith,

LL

 

[pukabead]

I have not posted before, but your posting brought back a powerful memory. Twenty seven years ago my daughter cultured PA when she was 4 months old and was put on IV antibiotics for two weeks. She had already had a tough start because she was born with meconeum ileus and required an ileostomy when she was two days old. At the time I was stunned - I was told to expect frequent hospitalizations going forward. But that is not what happened. She continued to culture PA but did not require IV antibiotics or hospitalization until she was 13 (she is a double delta F508).

There is no way to predict what will happen in the future, but proper treatment now and monitoring the infection going forward will surely help Liam. Pseudomonas needs to be taken seriously but I think it is important to remember that a full and active life is still a very real possiblity. My daughter continues to have health challenges (including AFB and MAC infections) but she has also graduated from college, snowboarded in Canada, traveled in Europe, has a growing business and is in a loving relationship with her boyfriend. Her life has rarely gone as predicted. The early Pseudomonas infection made us more diligent and aggressive in her care - and that has certainly helped her achieve the full life she currently enjoys.