Pseudomonas?

mom2cameron

New member
Well I got a bad call today from Camerons doctor....he has now cultured pseudomonas for the first time. He is actually sounding really good....like the best he has sounded in a while. No wheezing or coughing. No runny nose...nothing! So now we are going to do Cipro and Tobi. What else do we do? What can I expect? Will he get sick? So many questions..not any answers. <img src="i/expressions/face-icon-small-sad.gif" border="0"> What will this do to him? Does the medicine get rid of it? The doctor said it might make it go away but theyre not sure. What things should we avoid while trying to get rid of this? Please help...any advice or answers are greatly appreciated!
 

mom2cameron

New member
Well I got a bad call today from Camerons doctor....he has now cultured pseudomonas for the first time. He is actually sounding really good....like the best he has sounded in a while. No wheezing or coughing. No runny nose...nothing! So now we are going to do Cipro and Tobi. What else do we do? What can I expect? Will he get sick? So many questions..not any answers. <img src="i/expressions/face-icon-small-sad.gif" border="0"> What will this do to him? Does the medicine get rid of it? The doctor said it might make it go away but theyre not sure. What things should we avoid while trying to get rid of this? Please help...any advice or answers are greatly appreciated!
 

mom2cameron

New member
Well I got a bad call today from Camerons doctor....he has now cultured pseudomonas for the first time. He is actually sounding really good....like the best he has sounded in a while. No wheezing or coughing. No runny nose...nothing! So now we are going to do Cipro and Tobi. What else do we do? What can I expect? Will he get sick? So many questions..not any answers. <img src="i/expressions/face-icon-small-sad.gif" border="0"> What will this do to him? Does the medicine get rid of it? The doctor said it might make it go away but theyre not sure. What things should we avoid while trying to get rid of this? Please help...any advice or answers are greatly appreciated!
 

ymikhale

New member
It happened to my dd a year ago too, she was 15 mo. She was sick with a cold, slight cough and then we learned she had small colony of PA on her sputum culture. I was devastated, seemed like an end of the world.

Finally after a round of TObi & Cipro it was gone and she is doing fine. I just take more precautions in terms of hygiene etc but otherwise as if it never happened.

Have faith and it will be ok. Even if it is not eradicated, Tobi helps keep it under control and prevent major lung damage.
 

ymikhale

New member
It happened to my dd a year ago too, she was 15 mo. She was sick with a cold, slight cough and then we learned she had small colony of PA on her sputum culture. I was devastated, seemed like an end of the world.

Finally after a round of TObi & Cipro it was gone and she is doing fine. I just take more precautions in terms of hygiene etc but otherwise as if it never happened.

Have faith and it will be ok. Even if it is not eradicated, Tobi helps keep it under control and prevent major lung damage.
 

ymikhale

New member
It happened to my dd a year ago too, she was 15 mo. She was sick with a cold, slight cough and then we learned she had small colony of PA on her sputum culture. I was devastated, seemed like an end of the world.
<br />
<br />Finally after a round of TObi & Cipro it was gone and she is doing fine. I just take more precautions in terms of hygiene etc but otherwise as if it never happened.
<br />
<br />Have faith and it will be ok. Even if it is not eradicated, Tobi helps keep it under control and prevent major lung damage.
 
P

pencf

Guest
Lyndsi,

Love the spelling of your name by the way.

Don't panic. Did you know more the 85% of the CF population cultures PA?

The cipro and inhaled Tobi will do the trick. It probably will knock down far enough it wouldn't show up in cultures again for awhile. FYI: He might have had it before, but it didn't show in the cultures. Sometimes if they can get a good specimen from the airway, the bug might be lower then specimen came from.
Hang in there...my daughter has had PA since diagnosis, and we treat it, and knock it back....and that's it. She is 15 yrs old.

BA Mom of Madeline with CF, 15 yrs old, and Patrick 18, no CF
 
P

pencf

Guest
Lyndsi,

Love the spelling of your name by the way.

Don't panic. Did you know more the 85% of the CF population cultures PA?

The cipro and inhaled Tobi will do the trick. It probably will knock down far enough it wouldn't show up in cultures again for awhile. FYI: He might have had it before, but it didn't show in the cultures. Sometimes if they can get a good specimen from the airway, the bug might be lower then specimen came from.
Hang in there...my daughter has had PA since diagnosis, and we treat it, and knock it back....and that's it. She is 15 yrs old.

BA Mom of Madeline with CF, 15 yrs old, and Patrick 18, no CF
 
P

pencf

Guest
Lyndsi,
<br />
<br />Love the spelling of your name by the way.
<br />
<br />Don't panic. Did you know more the 85% of the CF population cultures PA?
<br />
<br />The cipro and inhaled Tobi will do the trick. It probably will knock down far enough it wouldn't show up in cultures again for awhile. FYI: He might have had it before, but it didn't show in the cultures. Sometimes if they can get a good specimen from the airway, the bug might be lower then specimen came from.
<br />Hang in there...my daughter has had PA since diagnosis, and we treat it, and knock it back....and that's it. She is 15 yrs old.
<br />
<br />BA Mom of Madeline with CF, 15 yrs old, and Patrick 18, no CF
 

mom2cameron

New member
Thanks guys...Ive already called our coordinator at the clinic and asked her everything...I feel much better now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

mom2cameron

New member
Thanks guys...Ive already called our coordinator at the clinic and asked her everything...I feel much better now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

mom2cameron

New member
Thanks guys...Ive already called our coordinator at the clinic and asked her everything...I feel much better now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

annasdad

New member
First post here...I signed up for exactly this reason. My kid is 17 months, and we just got the call today, positive culture for pseudomonas aeruginosa. My wife and I are pretty devastated. OK, I understand it's unrealistic to expect not to come in contact with this one, but we've done pretty well so far and we didn't see this coming.

We don't know what comes next or what to expect. It's Friday night so talking to the doctor won't happen until Monday.

So I figured I'd look here.

Pete (was hoping not to see any such infections until much later)
 

annasdad

New member
First post here...I signed up for exactly this reason. My kid is 17 months, and we just got the call today, positive culture for pseudomonas aeruginosa. My wife and I are pretty devastated. OK, I understand it's unrealistic to expect not to come in contact with this one, but we've done pretty well so far and we didn't see this coming.

We don't know what comes next or what to expect. It's Friday night so talking to the doctor won't happen until Monday.

So I figured I'd look here.

Pete (was hoping not to see any such infections until much later)
 

annasdad

New member
First post here...I signed up for exactly this reason. My kid is 17 months, and we just got the call today, positive culture for pseudomonas aeruginosa. My wife and I are pretty devastated. OK, I understand it's unrealistic to expect not to come in contact with this one, but we've done pretty well so far and we didn't see this coming.
<br />
<br />We don't know what comes next or what to expect. It's Friday night so talking to the doctor won't happen until Monday.
<br />
<br />So I figured I'd look here.
<br />
<br />Pete (was hoping not to see any such infections until much later)
 

mbrandazzo

New member
Hi,

I felt the same as you when my son cultured pseudo for the first time about a year ago... I was devastated! <img src="i/expressions/face-icon-small-sad.gif" border="0"> I felt like we did everything possible to prevent it, and even that didn't work!

Since then he has been doing just fine - not really showing any symptoms from it. We have been doing TOBI every other month and it seems to be keeping it at bay. He will culture it, then it will go away for a bit, and then he cultures it again.

Please know that so many of us on here can completely relate to how you are feeling, and it is only natural for you to worry, our kids are our most precious gifts!

You are doing everything you can for your kids by giving them the treatments for these bugs and asking questions to help them. I have to believe it will all pay off!

Take care and good luck!
 

mbrandazzo

New member
Hi,

I felt the same as you when my son cultured pseudo for the first time about a year ago... I was devastated! <img src="i/expressions/face-icon-small-sad.gif" border="0"> I felt like we did everything possible to prevent it, and even that didn't work!

Since then he has been doing just fine - not really showing any symptoms from it. We have been doing TOBI every other month and it seems to be keeping it at bay. He will culture it, then it will go away for a bit, and then he cultures it again.

Please know that so many of us on here can completely relate to how you are feeling, and it is only natural for you to worry, our kids are our most precious gifts!

You are doing everything you can for your kids by giving them the treatments for these bugs and asking questions to help them. I have to believe it will all pay off!

Take care and good luck!
 

mbrandazzo

New member
Hi,
<br />
<br />I felt the same as you when my son cultured pseudo for the first time about a year ago... I was devastated! <img src="i/expressions/face-icon-small-sad.gif" border="0"> I felt like we did everything possible to prevent it, and even that didn't work!
<br />
<br />Since then he has been doing just fine - not really showing any symptoms from it. We have been doing TOBI every other month and it seems to be keeping it at bay. He will culture it, then it will go away for a bit, and then he cultures it again.
<br />
<br />Please know that so many of us on here can completely relate to how you are feeling, and it is only natural for you to worry, our kids are our most precious gifts!
<br />
<br />You are doing everything you can for your kids by giving them the treatments for these bugs and asking questions to help them. I have to believe it will all pay off!
<br />
<br />Take care and good luck!
 

LisaGreene

New member
Hi All,
I SO remember when my son first got pseud at 2. I was devastated, cried, felt like it was "the beginning of the end", wondered where I went wrong, and on and on. And now, 9 years later, he is doing very well and is a happy, healthy (considering he has CF) and very normal pre-teen (now that's something to be worried about <img src="i/expressions/face-icon-small-wink.gif" border="0">).

There's not much you can do to prevent pseud (see my other post about this under the "parenting children with health issues" topic). My motto has always been: be prudent, not paranoid. The line can be a little fuzzy at times!

The cipro and tobi did the trick for us- it went away for a long time with my son. Now, he does have it all the time but is doing well. In fact, he just got back from a week, alone (as in "no Mom!"), at boy scout camp.

And, my daughter, age 9, has never cultured it. Same home, same lives, go figure....

So, hang in there. I know it's scary but take heart- it doesn't mean that your child is going to go straight downhill. There are so many things they can do to slow it down. Love your kids, enjoy every moment. That's what it's all about.

Hugs and hope,
Lisa
 

LisaGreene

New member
Hi All,
I SO remember when my son first got pseud at 2. I was devastated, cried, felt like it was "the beginning of the end", wondered where I went wrong, and on and on. And now, 9 years later, he is doing very well and is a happy, healthy (considering he has CF) and very normal pre-teen (now that's something to be worried about <img src="i/expressions/face-icon-small-wink.gif" border="0">).

There's not much you can do to prevent pseud (see my other post about this under the "parenting children with health issues" topic). My motto has always been: be prudent, not paranoid. The line can be a little fuzzy at times!

The cipro and tobi did the trick for us- it went away for a long time with my son. Now, he does have it all the time but is doing well. In fact, he just got back from a week, alone (as in "no Mom!"), at boy scout camp.

And, my daughter, age 9, has never cultured it. Same home, same lives, go figure....

So, hang in there. I know it's scary but take heart- it doesn't mean that your child is going to go straight downhill. There are so many things they can do to slow it down. Love your kids, enjoy every moment. That's what it's all about.

Hugs and hope,
Lisa
 
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