Help, I need info about Pseudomonas

[forsaxon]

Hey Guys, I really appreciate all the feed back you have given me & others & feel that you would be the best to turn to for info. For some reason I have latched myself onto this pseudomonas bug, and I need many answers to my many many questions about it, yet feel like I'm hitting my head against a brick wall when it comes to getting them! Now I am new to this as CF bubs is only 4 months old, but from what I gather it can be found in water thats has laid stagnant, for example a vase of flowers, a puddle, bath toys that haven't dried properly, bath plugs, dirt (?) etc etc. Now for this bug to cause problems it would have to be inhaled right? If this is the case, how would you get it from bath toys for example that have the bug on it? As I can see you may swallow some water with it, but how are you going to inhale it? Call me stupid, but I just don't get it!!! Our doctor/specialist tells me "they" don't know enough about this bug to answer all my questions. It is really doing my head in & I am going slowly crazy making sure all is dried after a bath (plug, toys etc) and bubs doesn't get too close to that vase on the bench & that any water droplets in my kitchen sink/bench have been completely dried etc . What I need to do is educate myself on this bug, so that water will not be my enemy. That is why I'm turning to you. Also if you have this bug what does it actually do? I have heard that is makes a little home for itself on the lungs & is quite hard to get rid of, but apart from that I have no idea what it does. Yet I am very wary of it! Yep, told you I'm going crazzzzzzzzyyyyy!!!!!!!!
Any info you can give me would be grealty appreciated.

Yours in health
Donna (Mum to baby boy 4mths W/CF daughter 3 1/2yrs WO/CF)

 

[anonymous]

I am in the same state you are but every thing i have done Saydee still cultured it last month.Why or how who knows except it is in the environment and cf patients sooner or later get it. That is what the cf doctor told me. She went yesterday to cf clinic and they said she is doing great no coughing, wheezing,ect.. She has done well from the get go. She was diagnosed through the State mandated newborn blood screen or who know's when she would have been caught. But I am so scared but all I can do is do my best to educate myself and try hard to keep ahead of things.....I have talked to lots of cf patients that have lived with it for 10 to 12 years or more. But her doc.said they have seen if they hit the patients pretty hard from the go that they have seen good results but can't promise because people can't control everything.
Katina( Mom of Saydee 8m w/cf)
Keriona 3yrs. w/ocf
Ethan 8yrs. w/ocf

 

[JazzysMom]

I have had tested positive for psdeumonas for so long I cant even tell you how long. When I was little I played in the mud, swam in the river & wrestled with the dog in the yard so maybe I was destined. Maybe it could have been prevented. I dont know. What I do know is that no matter how hard you try, things will still happen. I dont want to discourage you from cleaning or educating yourself etc. I just want you to realize that even the best conditions cant gaurantee anything. I have a friend who is obsessive about cleaning the tub (I mean scrubbing, bleaching, etc) each & every time before her son takes a bath (non CF family) yet he has had some of the oddest bacterias caught in "normal" places.

 

[rose4cale]

I too am a little anxious over the bug. I empty the backyard pool and give it fresh water everytime my son gets in it. I make sure his sippy cups and valves are dry as a bone before I pour a drink in it. I threw away all of his bath toys that squirt. But he isn't deprived of doing things. I want to educate myself on this too. I know it is inevitable that he will sometime culture it, but the longer I can keep it away, the better (for my head) <img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[anonymous]

After reading all this stuff, I am starting to feel a little strange. I do not do the things that people on here are saying they do. I don't bleach the bathtub, and sterilize the house, etc etc. We have just gone about our normal lives since my son was diagnosed. He hasn't cultured the psuedomonas, and I am not even quite positive that I know what they are. All I know is, my son has CF, and nothing is going to change that. I don't want him to grow up thinking that he is any better (or worse) than any other little kid. I do not give him special treatment now, nor will I ever. He is just a normal kid, only he takes a few more meds than others. Should I be doing all this stuff too?

 

[anonymous]

I also have never done any of the things that some of you are mentioning. I've just tried to let my child have as "normal" a childhood as possible. I never did any of those things with my 1st child. My child is 11 and has never cultured Pseudomonas.

 

[CFHockeyMom]

I don't necessarily think there's anything wrong with doing all the "disinfecting" but I've always felt that you can't keep your kids in a bubble. Sooner or later they're going to "get dirty". If memory serves, they're (the they in this case would be the scientific/medical community) are now saying that children who are exposed to more germs/bacteria when they are younger tend to have better immune systems as they get older.

Sean has Pseudomonas (has since he was diagnosed at 11 weeks) and cultures for it a 1 or 2 times a year but the other 2 or 3 times a year he doesn't. Fortunately, it hasn't really seemed to make a difference in his day to day routine/life.

 

[forsaxon]

So please explain... For those who have cultured this bug how do they know you have it, I mean what tests are done? It is obviously different in Australia from what I am reading (not the bug! but CF care!!!)
And what happens when you have it, eg lack of energy, a cough, wheezing what? Just trying to get my head around it so I know what I'm dealing with. I know I can't keep him in a bubble, but I would like to think I did what I could without him in a bubble if you know what I mean! But then again looks like thats not even a certainty. URGHHHHHHHHHHH! Yep told you, it's driving me slowly crazy!!!

In health
Donna (mum to baby boy 4mths w/cf & daughter 3 1/2 wo/cf)

 

[anonymous]

i am 20 and ì`ve been having the pseudomonas since 2 yrs now. i was quite depressed when it didn`t go away, but now, 2 yrs later I know that you can deal with it.
of course it is always better to live without bugs, but also with bugs you can lead a good life just as before.
what i noticed, is, that the colour of my sputum changed since then and it is thicker sometimes. but these are not things you are helpless against. with pulmozyme, colistin, much eating and therapy/SPORT!!! i have been able to keep my status. it is important that the sputum doesn`t stay like this down in the lungs and you can prevent this quite well with this combination of methods. and the last time i was at the doctor the results were even better than the ones last year.
it depends very much on you yourself, what you make out of it--- you can do a lot to improve...
of course you should take care of yourself more carefully... but it`s worth it!

Lisa, 20, CF

 

[rose4cale]

I wouldn't say my son is in a bubble because he still plays in the pool, tub, dirt etc. I do clean as much as I can without being obsessed with it. Some exposure to germs and bacterias are fine I know, but if I can prevent an infection, I guess I'm going to try. My Drs seem to agree with this theory. If and when he gets it, we'll deal with it and not bang our heads against the wall and wonder what we could have done different.

He does and is allowed to do more than a lot of healthy kids. We just take precautions.

 

[anonymous]

Katina, My son was also picked up by a new born screening. It was a study not even mandated. We never imagined they would find cf. Anyways my son is now three and thankfully not a sign or symptom yet. not even enzymes. As you said who knows when they would of found this disease. I too try to educate myself with everything I can. The truth is sometimes we forget he has this disease I think the longer you live with the diagnosis the more you say he needs to live and experience life. I haven't gone totally crazy cleaning. We do live on a very large pond and in the begining thought of selling our house. It is a part of us and who we are. We ski and boat daily. I kept my son out of it for the first 3 years but realistically he will probally want to ski like his siblings. He already asks for his turn. Chris

 

[wuffles]

When I was little, I played with bath toys every night, helped my parents in the garden, went to water parks, played in puddles, probably ate dirt.. and I have only cultured pseudemonas for just under two years now. I cultured it when I caught pneumonia 2 years ago, and it's been lingering since then. However, it rarely causes problems and has not put me in hospital yet. It has flared up only twice since then, both times I have had an existing cold/virus. It causes a really productive cough for me, mainly. Both times it has been controlled with oral antibiotics <img src="i/expressions/face-icon-small-smile.gif" border="0"> My lung function was approximately 110% before the pneumonia and pseudemonas, and is now 100%.

As with everything to do with CF, different bugs affect everyone in a different way. It makes some people very sick, and hardly affects others at all.

 

[VOOGIE]

Hi Donna,
My daughter is now six years old, and she was first diagnosed as having a pseudomonas infection when she was about 11 months old. At the time, her Paediatrition said that CF patients don't normally pick up th bug until they are in their teens(I don't know why),and so we were very upset. He also said that we needed to try to eradicate it completely at this stage (with an aggressive combination of 2 weeks of IV (Tobramycin) and 3 months nebulised(Colomycin) antibiotics, and of course extra physio during the antibiotics course) rather than just reduce the numbers of the bacteria within the lungs, as if not eradicated, some of the bacteria would lie within the lungs and cause further infections, which would eventually result in Chronic(long term) colonisation within the lungs. My daughter recovered well within a couple of weeks, and we took her for a week's holiday to a hot dry climate(Cyprus), and she had virtually a whole summertime without coughing after that. However in the folowing 2 and a half years she had a pseudomonas infection 5 times, and her paedeatrician said that we unfortunately we would have to accept the fact that her lungs were chronically colonised, and that it was too late to eradicate it.
At the time we lived in a small flat which was badly insulated and suffered from damp mould growth on the walls at times. However we then moved to a more spacious house which was well insulated and had very good circulation due to the updraft provided by an open fire. My daughter has not grown pseudomonas on any of her frequently taken cough swabs since.
We understand that a WARM, damp environment is the ideal breeding ground for the bug. We try to keep our daughter away from Vase water, ponds, and fresh water streams etc (sea water is fine as the salt means that pseudomonas cannot survive there) and try to discourage playing near sinks. My daughter does however, like most young children, love playing in and with water. We encourage her to wash her hands frequently at the sink, and make sure that she uses antibacterial handwash. She plays with lots of toys in the bath, and we just make sure that they air dry well before she uses them again, and if in doubt we spray them with antibacterial spray such as Dettol, which we also spray periodically on taps and plug holes, as well as bleaching plugholes and drains frequently. She also loves playing in her paddling pool, which again we make sure is dried out and cleaned after each use, and we put salt in the the paddling pool water when she's using it as an extra precaution. Swimming pools are fine as long as they are well chlorinated.
I believe that the reason why pseudomonas can be inhaled from water is that, although it is at a very slow rate, water vapour escapes from the surface of the water, and of course this may contain pseudomonas.
I hope all of this doesn't just confuse you, but the message that I'm trying to get across is that there is hope and, and although you do have to adapt life and be cautious, no, water is not an enemy.

God bless you and your family.
Greg.

 

[anonymous]

I agree with Greg's post very much. I think it is important to keep things clean/sanitized (it would be important to me to do this even without considering CF). You will eventually find your comfort zone and be able to enjoy some of the things that you are scared of right now.

 

[anonymous]

Not sure if you are still looking for pseudo info anymore Donna, but here is a website that I just re-found (I had come across it months ago but lost my bookmark for it). There is all kinds of info on this, mostly written in medical jargon so it can be confusing but still interesting:

<a target=new class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/pseudomonas.htm
">http://www3.nbnet.nb.ca/normap/pseudomonas.htm
</a>
HTH,
Kelli

 

[anonymous]

Just a quick comment.

I have two daughters both with CF. They are 4 and 2. For some reason our 2 year old cultured pseudomonas earlier this year and my 4 year old is still clear. They live in the same house, play with pretty much the same toys and do most of the same things.

I wonder if it is just easier for some to get pseudomonas than others????