We just got the news that my daughter cultured pseudomonas again. She is 5. She cultured it the same time last year. We have done lots of swimming, I would like to know if I should stop letting her swim. We do live in south Louisiana, and she could have gotten it when the weather has become hot and humid. I just find it strange that she has gotten it at the onset of summer. Anyone else in our same position?
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Pseudomonas
- Thread starter cabadie1
- Start date
sweetninis
New member
Swimming is a great thing as they say but every drop of Water contains lots of bacteria that immuno compromised people cannot cope with so as a cf kid mom I would keep my daughter away from water(swimming)
H
heidikk
Guest
is this in public pools that there is a problem?
Aboveallislove
Super Moderator
I believe I read studies show that 25% of public pools have pseudomonas, but then swimming is a great exercise. Some buy test strips for chlorine before letting kiddos in. All a balance which each family does differently. Lakes etc have more risks.
Hi there,
My son who is almost 6 cultured pseudomonas for the 1st time last week. Adjusting to the extra treatments and tobi is taking some getting use to. My son has also been taking swimming lessons in a public community center pool for the last year. We have made many changes to try to protect him, but I'm not willing to stop swimming lessons. He loves it! Four days a week, and he is gaining so much from them. It would break his heart to stop. We do avoid lakes and ponds, except for fishing. Hugs to you!
Sarah
mommy to johnny almost 6 w/cf and bailey 3 no cf
My son who is almost 6 cultured pseudomonas for the 1st time last week. Adjusting to the extra treatments and tobi is taking some getting use to. My son has also been taking swimming lessons in a public community center pool for the last year. We have made many changes to try to protect him, but I'm not willing to stop swimming lessons. He loves it! Four days a week, and he is gaining so much from them. It would break his heart to stop. We do avoid lakes and ponds, except for fishing. Hugs to you!
Sarah
mommy to johnny almost 6 w/cf and bailey 3 no cf
Your daughter is just as likely to contract pseudomonas from taking a bath at home as she is from swimming. It can be found in any source of water. Let her be a kid and swim. My parents never shielded me from anything growing up. They wanted me to live life without fear instead of cowering in fear. The motto growing up was "CF does not have me, I have CF." If your daughter enjoys swimming, don't take that away from her. I don't have the perpective of a parent, so I can't understand that worry. However, if your daughter sees you living in fear of her doing things because of her CF, she might start shying away from life, afraid to get out there and really live.
H
heidikk
Guest
ok, seriously? pseudomonas is in bath water? how? and if there's so much bad with any source of water, what of the Australian surfers I keep hearing about? Does the salt in ocean water kill some of the nasties maybe?
I swam all the time as a kid and never contracted it. Lately I have not been in any public pools because I have no interest, but I have swam in many lakes and still have not contracted it. It might just depend on the person, when they are exposed, and their bodies ability to fight it off. I still say live your life an don't avoid everything in fear.
Heidikk,
Pseudomonas grows in water and has even been found to grow in distilled water. I have always been told that any source of water runs the risk of being contaminated with the bacteria. Kmhbeauty was told the same thing I was, it seems. Pseudo can even be found growing on plants. There's really no way to escape the bacteria, only ways to better arm and prepare yourself against it.
Pseudomonas grows in water and has even been found to grow in distilled water. I have always been told that any source of water runs the risk of being contaminated with the bacteria. Kmhbeauty was told the same thing I was, it seems. Pseudo can even be found growing on plants. There's really no way to escape the bacteria, only ways to better arm and prepare yourself against it.
H
heidikk
Guest
wow. so we're all exposed to pseudomonas all the time, just those of us without cf fight it off. Those with cf can't because their mucus is too sticky? I know I'm probably asking stupid basics questions. Kind of like the lung exacerbations. What causes them? I hear on the one hand, let them be exposed to stuff to strengthen their immune system and then I hear don't let them catch a cold because it'll turn into an exacerbation.
L
Lety
Guest
Where can I find the trips to test the water?
Aboveallislove
Super Moderator
Just a pool supply store. It's a test for the chlorine and other levels which should kill bacteria if in proper amounts/balances.
wow. so we're all exposed to pseudomonas all the time, just those of us without cf fight it off. Those with cf can't because their mucus is too sticky? I know I'm probably asking stupid basics questions. Kind of like the lung exacerbations. What causes them? I hear on the one hand, let them be exposed to stuff to strengthen their immune system and then I hear don't let them catch a cold because it'll turn into an exacerbation.
Essentially, you've got it right. The thick mucus CFer's have makes it a prime breeding ground for all sorts of stuff and it also makes it hard to clear that stuff out of our bodies. As for lung exacerbations, different things can cause them. For me, there's nothing that really triggers them, I just happen to go through a cycle where I am healthy for a couple months and then I just start to get sick and I'll have to go in for a tune-up. Others need some extra help after getting a cold. It takes some time, but eventually you really come to understand your body and what gives it trouble.
My parents let me be exposed to the normal things a kid would be exposed to, but they did try and keep me away from people who were sick. They didn't want me to get colds or the flu, but they didn't limit my exposure to other things. I started camping when I was 3 months old and have been going every summer since. I've swam in rivers, lakes, ponds, pools...if it was big enough for me to swim in, I was there. I went to public school starting in Kindergarten and lasting all the way until I graduated. I can't even begin to imagine everything I was exposed to there. I have a younger sister without CF and the idea behind how my parents raised me was anything my sister could do, so could I.
MotherofCFBoy11yrs
Member
I decided to stop my son's swimming lessons last year because he seemed to consistently get staph and candida in his upper airways. During longer breaks from swimming we could get rid of the infections, but as soon as the lessons started they reappeared. The lessons were at a pool with a good reputation. I do let him swim in a lake nearby (I once asked for a bacterial report of the lake and it seems safe) and of course in the ocean when we get a chance.
I know that in my son's school some other children are also discouraged from swimming for various reasons (skin problems for example), it's pretty common and it don't think it's overly restrictive, there are so many other things they can do.
I don't think that PA is everywhere, it's mainly in nature, especially water, and of course in hospitals. And swimming pools. For example pools in Sydney's newest swimming complex were closed for several days last year because of a PA outbreak, and there was a study of public swimming pools in Ireland, almost half of them had PA. During swimming the possibly dirty water gets in direct contact with the airways, this does not happen with boating etc.
BTW I've read that it is a common misconception that excessive mucus in CF lungs causes lung disease. The problem is that the mucus in CF lungs does not have proper bacterial killing properties (my son takes tobramycin daily to compensate for this) which leads to infection and this causes mucus build up. So if there is no infection, there is no thick mucus.
I know that in my son's school some other children are also discouraged from swimming for various reasons (skin problems for example), it's pretty common and it don't think it's overly restrictive, there are so many other things they can do.
I don't think that PA is everywhere, it's mainly in nature, especially water, and of course in hospitals. And swimming pools. For example pools in Sydney's newest swimming complex were closed for several days last year because of a PA outbreak, and there was a study of public swimming pools in Ireland, almost half of them had PA. During swimming the possibly dirty water gets in direct contact with the airways, this does not happen with boating etc.
BTW I've read that it is a common misconception that excessive mucus in CF lungs causes lung disease. The problem is that the mucus in CF lungs does not have proper bacterial killing properties (my son takes tobramycin daily to compensate for this) which leads to infection and this causes mucus build up. So if there is no infection, there is no thick mucus.
I have always been told the mucus is thick because the chloride channels do not function properly. Of course, I do not understand the differences between different mutations, but I have never heard that the thick mucus is a result of having infections. Where were you told this? I'm interested in reading more about this theory.
MotherofCFBoy11yrs
Member
Hi nmw0615, for example this article: http://rc.rcjournal.com/content/54/6/726.full.pdf. And this is about the immunodeficiency: http://www.nature.com/nm/journal/v18/n4/abs/nm.2715.html.
There are different theories why people with CF are so susceptible for lung infections, one is that it is caused by problems in bicarbonate transport. I think the important thing to know is that excessive mucus is not something that happens automatically, but is the result of infection/inflammation and these things can be prevented or treated.
There are different theories why people with CF are so susceptible for lung infections, one is that it is caused by problems in bicarbonate transport. I think the important thing to know is that excessive mucus is not something that happens automatically, but is the result of infection/inflammation and these things can be prevented or treated.
my dd (5 y/o) cultured PA twice: once at 18 months, also around beginning of summer, the second time when she was 3 y/o. We were lucky to get rid of it with Tobi each time, but it was a huge burden for her and for us. For this reason I try to limit her exposure to high risk places like ponds, lakes and swimlming pools. there are so many other things we can do. I know it does not guarantee she will not catch it, but for us it was not worth it exposinig her just to prove that she is a "normal" kid (which deep in heart i know she is not). But then it is a very personal decision.