??Pseudomonas??

[ktsmom]

Hi - we got that news shortly after our daughter's diagnosis and yes it felt like a kick in the gut. We were put on TOBI and Cipro (oral antibiotic) for 3 months. Then TOBI 28 days on/28 days off. That was in September of 2006. We finished the 3 month regimen and subsequently had a clear culture, and they have all been clear since. I would wonder why they are not also doing an oral antibiotic, but that's just from our own experience.

I know that clear cultures don't necessarily mean there is no Psuedo, but I'm not having my kid do a bronch at this point because she has no other symptoms to indicate that she may have Pseudo lurking anywhere. But again, that's just me.

If this is your first time for TOBI, it takes us about 22 minutes with a compressor and PARI LC Plus neb. I mention this because I've seen some moms who, not knowing any different, were putting up with 45 minutes of TOBI; in that case something is likely wrong with your compressor and/or neb. The e-flow nebulizer is a whole different story; PM me or search the forums if you have Q's about that.

Try not to be scared - it is tough when new things pop up because you already think you've got enough on your plate. Let us know how it is going and I bet your daughter gets through this just fine! And you will, too! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[ktsmom]

Hi - we got that news shortly after our daughter's diagnosis and yes it felt like a kick in the gut. We were put on TOBI and Cipro (oral antibiotic) for 3 months. Then TOBI 28 days on/28 days off. That was in September of 2006. We finished the 3 month regimen and subsequently had a clear culture, and they have all been clear since. I would wonder why they are not also doing an oral antibiotic, but that's just from our own experience.

I know that clear cultures don't necessarily mean there is no Psuedo, but I'm not having my kid do a bronch at this point because she has no other symptoms to indicate that she may have Pseudo lurking anywhere. But again, that's just me.

If this is your first time for TOBI, it takes us about 22 minutes with a compressor and PARI LC Plus neb. I mention this because I've seen some moms who, not knowing any different, were putting up with 45 minutes of TOBI; in that case something is likely wrong with your compressor and/or neb. The e-flow nebulizer is a whole different story; PM me or search the forums if you have Q's about that.

Try not to be scared - it is tough when new things pop up because you already think you've got enough on your plate. Let us know how it is going and I bet your daughter gets through this just fine! And you will, too! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[ktsmom]

Hi - we got that news shortly after our daughter's diagnosis and yes it felt like a kick in the gut. We were put on TOBI and Cipro (oral antibiotic) for 3 months. Then TOBI 28 days on/28 days off. That was in September of 2006. We finished the 3 month regimen and subsequently had a clear culture, and they have all been clear since. I would wonder why they are not also doing an oral antibiotic, but that's just from our own experience.

I know that clear cultures don't necessarily mean there is no Psuedo, but I'm not having my kid do a bronch at this point because she has no other symptoms to indicate that she may have Pseudo lurking anywhere. But again, that's just me.

If this is your first time for TOBI, it takes us about 22 minutes with a compressor and PARI LC Plus neb. I mention this because I've seen some moms who, not knowing any different, were putting up with 45 minutes of TOBI; in that case something is likely wrong with your compressor and/or neb. The e-flow nebulizer is a whole different story; PM me or search the forums if you have Q's about that.

Try not to be scared - it is tough when new things pop up because you already think you've got enough on your plate. Let us know how it is going and I bet your daughter gets through this just fine! And you will, too! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[ktsmom]

Hi - we got that news shortly after our daughter's diagnosis and yes it felt like a kick in the gut. We were put on TOBI and Cipro (oral antibiotic) for 3 months. Then TOBI 28 days on/28 days off. That was in September of 2006. We finished the 3 month regimen and subsequently had a clear culture, and they have all been clear since. I would wonder why they are not also doing an oral antibiotic, but that's just from our own experience.

I know that clear cultures don't necessarily mean there is no Psuedo, but I'm not having my kid do a bronch at this point because she has no other symptoms to indicate that she may have Pseudo lurking anywhere. But again, that's just me.

If this is your first time for TOBI, it takes us about 22 minutes with a compressor and PARI LC Plus neb. I mention this because I've seen some moms who, not knowing any different, were putting up with 45 minutes of TOBI; in that case something is likely wrong with your compressor and/or neb. The e-flow nebulizer is a whole different story; PM me or search the forums if you have Q's about that.

Try not to be scared - it is tough when new things pop up because you already think you've got enough on your plate. Let us know how it is going and I bet your daughter gets through this just fine! And you will, too! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[ktsmom]

Hi - we got that news shortly after our daughter's diagnosis and yes it felt like a kick in the gut. We were put on TOBI and Cipro (oral antibiotic) for 3 months. Then TOBI 28 days on/28 days off. That was in September of 2006. We finished the 3 month regimen and subsequently had a clear culture, and they have all been clear since. I would wonder why they are not also doing an oral antibiotic, but that's just from our own experience.

I know that clear cultures don't necessarily mean there is no Psuedo, but I'm not having my kid do a bronch at this point because she has no other symptoms to indicate that she may have Pseudo lurking anywhere. But again, that's just me.

If this is your first time for TOBI, it takes us about 22 minutes with a compressor and PARI LC Plus neb. I mention this because I've seen some moms who, not knowing any different, were putting up with 45 minutes of TOBI; in that case something is likely wrong with your compressor and/or neb. The e-flow nebulizer is a whole different story; PM me or search the forums if you have Q's about that.

Try not to be scared - it is tough when new things pop up because you already think you've got enough on your plate. Let us know how it is going and I bet your daughter gets through this just fine! And you will, too! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Ratatosk]

Was a kick in the gut when DS first cultured pseudo at 3 months -- really brought home the fact that he REALLY did have cystic fibrosis. Prior to that, we still did treatments, meds, but kinda were in denial -- that the diagnosis was just a big mistake and someday someone would say whoops.

Whenever DS has cultured it, we've always gone into the clinic appointment thinking -- he's doing great, no symptoms, only to find a few days later that he's cultured it once again. We have noticed that he tends to culture it when he's got a bit of a stuffy nose or head cold and since he's always had sinus issues, we suspect it's in his sinuses. When he actually did a sputum culture for the first time, he didn't culture it -- unfortunately at that time he showed steno malt. Sigh.

Oh and we were one of the parents with a brand new pari proneb ultra doing 20-25 minute albuteral atrovent treatments and 45-50 minutes of tobi. Wish we'd known back then we had a faulty compressor.

 

[Ratatosk]

Was a kick in the gut when DS first cultured pseudo at 3 months -- really brought home the fact that he REALLY did have cystic fibrosis. Prior to that, we still did treatments, meds, but kinda were in denial -- that the diagnosis was just a big mistake and someday someone would say whoops.

Whenever DS has cultured it, we've always gone into the clinic appointment thinking -- he's doing great, no symptoms, only to find a few days later that he's cultured it once again. We have noticed that he tends to culture it when he's got a bit of a stuffy nose or head cold and since he's always had sinus issues, we suspect it's in his sinuses. When he actually did a sputum culture for the first time, he didn't culture it -- unfortunately at that time he showed steno malt. Sigh.

Oh and we were one of the parents with a brand new pari proneb ultra doing 20-25 minute albuteral atrovent treatments and 45-50 minutes of tobi. Wish we'd known back then we had a faulty compressor.

 

[Ratatosk]

Was a kick in the gut when DS first cultured pseudo at 3 months -- really brought home the fact that he REALLY did have cystic fibrosis. Prior to that, we still did treatments, meds, but kinda were in denial -- that the diagnosis was just a big mistake and someday someone would say whoops.

Whenever DS has cultured it, we've always gone into the clinic appointment thinking -- he's doing great, no symptoms, only to find a few days later that he's cultured it once again. We have noticed that he tends to culture it when he's got a bit of a stuffy nose or head cold and since he's always had sinus issues, we suspect it's in his sinuses. When he actually did a sputum culture for the first time, he didn't culture it -- unfortunately at that time he showed steno malt. Sigh.

Oh and we were one of the parents with a brand new pari proneb ultra doing 20-25 minute albuteral atrovent treatments and 45-50 minutes of tobi. Wish we'd known back then we had a faulty compressor.

 

[Ratatosk]

Was a kick in the gut when DS first cultured pseudo at 3 months -- really brought home the fact that he REALLY did have cystic fibrosis. Prior to that, we still did treatments, meds, but kinda were in denial -- that the diagnosis was just a big mistake and someday someone would say whoops.

Whenever DS has cultured it, we've always gone into the clinic appointment thinking -- he's doing great, no symptoms, only to find a few days later that he's cultured it once again. We have noticed that he tends to culture it when he's got a bit of a stuffy nose or head cold and since he's always had sinus issues, we suspect it's in his sinuses. When he actually did a sputum culture for the first time, he didn't culture it -- unfortunately at that time he showed steno malt. Sigh.

Oh and we were one of the parents with a brand new pari proneb ultra doing 20-25 minute albuteral atrovent treatments and 45-50 minutes of tobi. Wish we'd known back then we had a faulty compressor.

 

[Ratatosk]

Was a kick in the gut when DS first cultured pseudo at 3 months -- really brought home the fact that he REALLY did have cystic fibrosis. Prior to that, we still did treatments, meds, but kinda were in denial -- that the diagnosis was just a big mistake and someday someone would say whoops.

Whenever DS has cultured it, we've always gone into the clinic appointment thinking -- he's doing great, no symptoms, only to find a few days later that he's cultured it once again. We have noticed that he tends to culture it when he's got a bit of a stuffy nose or head cold and since he's always had sinus issues, we suspect it's in his sinuses. When he actually did a sputum culture for the first time, he didn't culture it -- unfortunately at that time he showed steno malt. Sigh.

Oh and we were one of the parents with a brand new pari proneb ultra doing 20-25 minute albuteral atrovent treatments and 45-50 minutes of tobi. Wish we'd known back then we had a faulty compressor.

 

[Alyssa]

My daughter has only cultured PA once. One month of Tobi, along with oral cipro did the trick. We too, let it go for a couple of months, not knowing we were dealing with PA -- so you are definitely not alone!

I agree with the other posters, that sputum samples do not always tell the whole truth, but I too would be a little leery of doing a bronch right away.

My daughter was 15 so we could get some really good feedback from her about how she was feeling, so we assumed it was gone.... that was 4 years ago, so I'm still assuming it's really gone

 

[Alyssa]

My daughter has only cultured PA once. One month of Tobi, along with oral cipro did the trick. We too, let it go for a couple of months, not knowing we were dealing with PA -- so you are definitely not alone!

I agree with the other posters, that sputum samples do not always tell the whole truth, but I too would be a little leery of doing a bronch right away.

My daughter was 15 so we could get some really good feedback from her about how she was feeling, so we assumed it was gone.... that was 4 years ago, so I'm still assuming it's really gone

 

[Alyssa]

My daughter has only cultured PA once. One month of Tobi, along with oral cipro did the trick. We too, let it go for a couple of months, not knowing we were dealing with PA -- so you are definitely not alone!

I agree with the other posters, that sputum samples do not always tell the whole truth, but I too would be a little leery of doing a bronch right away.

My daughter was 15 so we could get some really good feedback from her about how she was feeling, so we assumed it was gone.... that was 4 years ago, so I'm still assuming it's really gone

 

[Alyssa]

My daughter has only cultured PA once. One month of Tobi, along with oral cipro did the trick. We too, let it go for a couple of months, not knowing we were dealing with PA -- so you are definitely not alone!

I agree with the other posters, that sputum samples do not always tell the whole truth, but I too would be a little leery of doing a bronch right away.

My daughter was 15 so we could get some really good feedback from her about how she was feeling, so we assumed it was gone.... that was 4 years ago, so I'm still assuming it's really gone

 

[Alyssa]

My daughter has only cultured PA once. One month of Tobi, along with oral cipro did the trick. We too, let it go for a couple of months, not knowing we were dealing with PA -- so you are definitely not alone!

I agree with the other posters, that sputum samples do not always tell the whole truth, but I too would be a little leery of doing a bronch right away.

My daughter was 15 so we could get some really good feedback from her about how she was feeling, so we assumed it was gone.... that was 4 years ago, so I'm still assuming it's really gone

 

[mom2haydie]

My daughter keeps having positive throat swabs for PA. She is 19 months and just last week had a 5th swab come back with it. We have done TOBI every other month since her second positive and she still gets it off and on which makes me wonder if her negative ones are actually negative. It's making me crazy! I feel like I am sterilizing everything in sight and she still gets it. She has no signs of having issues with her lungs at this point so I think that's why it's always such a shock. We mainly deal with intestinal stuff with her. Sorry for venting on someone else's thread!
The good news for your daughter, Faith4Liliana, is that I know many people whose children were able to get rid of it with TOBI and cipro and successfully keep it from coming back. Good Luck!

 

[mom2haydie]

My daughter keeps having positive throat swabs for PA. She is 19 months and just last week had a 5th swab come back with it. We have done TOBI every other month since her second positive and she still gets it off and on which makes me wonder if her negative ones are actually negative. It's making me crazy! I feel like I am sterilizing everything in sight and she still gets it. She has no signs of having issues with her lungs at this point so I think that's why it's always such a shock. We mainly deal with intestinal stuff with her. Sorry for venting on someone else's thread!
The good news for your daughter, Faith4Liliana, is that I know many people whose children were able to get rid of it with TOBI and cipro and successfully keep it from coming back. Good Luck!

 

[mom2haydie]

My daughter keeps having positive throat swabs for PA. She is 19 months and just last week had a 5th swab come back with it. We have done TOBI every other month since her second positive and she still gets it off and on which makes me wonder if her negative ones are actually negative. It's making me crazy! I feel like I am sterilizing everything in sight and she still gets it. She has no signs of having issues with her lungs at this point so I think that's why it's always such a shock. We mainly deal with intestinal stuff with her. Sorry for venting on someone else's thread!
The good news for your daughter, Faith4Liliana, is that I know many people whose children were able to get rid of it with TOBI and cipro and successfully keep it from coming back. Good Luck!

 

[mom2haydie]

My daughter keeps having positive throat swabs for PA. She is 19 months and just last week had a 5th swab come back with it. We have done TOBI every other month since her second positive and she still gets it off and on which makes me wonder if her negative ones are actually negative. It's making me crazy! I feel like I am sterilizing everything in sight and she still gets it. She has no signs of having issues with her lungs at this point so I think that's why it's always such a shock. We mainly deal with intestinal stuff with her. Sorry for venting on someone else's thread!
The good news for your daughter, Faith4Liliana, is that I know many people whose children were able to get rid of it with TOBI and cipro and successfully keep it from coming back. Good Luck!

 

[mom2haydie]

My daughter keeps having positive throat swabs for PA. She is 19 months and just last week had a 5th swab come back with it. We have done TOBI every other month since her second positive and she still gets it off and on which makes me wonder if her negative ones are actually negative. It's making me crazy! I feel like I am sterilizing everything in sight and she still gets it. She has no signs of having issues with her lungs at this point so I think that's why it's always such a shock. We mainly deal with intestinal stuff with her. Sorry for venting on someone else's thread!
The good news for your daughter, Faith4Liliana, is that I know many people whose children were able to get rid of it with TOBI and cipro and successfully keep it from coming back. Good Luck!