Hi

T

tammykrumrey

Guest
My younger daughter cultured PA about 5 years ago. She did inhaled Tobi and oral Cipro, 2 months of both, and has not cultured it since. She is 12 years old, FEV 100% <img src="i/expressions/face-icon-small-smile.gif" border="0"> My older daughter just cultured it last month, has done Tobi and Cipro, but haven't had another culture since then. She seems to be doing well. She is 13 years old, and an FEV of 90% <img src="i/expressions/face-icon-small-smile.gif" border="0"> I was very worried too, back 5 years ago when my little one started culturing it. But all has been ok.
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<br />I wasn't so concerned when my older one started culturing it. She started culturing B. Cepacia two years ago, and that one really threw me for a loop!!
 
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Larasmom

New member
Thanks to all that replied..
Jenny, I will keep my fingers crossed for the jinx!
...Your posts were calming and that's what I need right now....CALM! Lara has 3 more days of Cipro and what seems like forever left on Tobi (its doing a job on her throat) and goes back to the Dr. 10/6 for another culture. Do people take Tobi everyday or is it always 28 days on, 28 days off?

Marie
 
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Larasmom

New member
Thanks to all that replied..
Jenny, I will keep my fingers crossed for the jinx!
...Your posts were calming and that's what I need right now....CALM! Lara has 3 more days of Cipro and what seems like forever left on Tobi (its doing a job on her throat) and goes back to the Dr. 10/6 for another culture. Do people take Tobi everyday or is it always 28 days on, 28 days off?

Marie
 
L

Larasmom

New member
Thanks to all that replied..
<br />Jenny, I will keep my fingers crossed for the jinx!
<br />...Your posts were calming and that's what I need right now....CALM! Lara has 3 more days of Cipro and what seems like forever left on Tobi (its doing a job on her throat) and goes back to the Dr. 10/6 for another culture. Do people take Tobi everyday or is it always 28 days on, 28 days off?
<br />
<br />Marie
 
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CJPsMom

New member
I know the feeling.  We got the call yesterday.  Our 10 month old cultured for PA & acinetobacter (sp).  We were already scheduled to be at the hospital this coming Monday for a bronchoscopy & endoscopy outpatient...but they told us to be prepared to stay for 2 weeks for IV meds.<br><br>Has anyone done the IV meds with a little one?  We're just not sure how they're going to put & keep an IV in a crawling 10 month old.  A PICC line?  If so, how to keep him still??<br><br>UGH.  And we start Tobi as soon as it gets here...*sigh*<br>
 
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CJPsMom

New member
I know the feeling. We got the call yesterday. Our 10 month old cultured for PA & acinetobacter (sp). We were already scheduled to be at the hospital this coming Monday for a bronchoscopy & endoscopy outpatient...but they told us to be prepared to stay for 2 weeks for IV meds.<br><br>Has anyone done the IV meds with a little one? We're just not sure how they're going to put & keep an IV in a crawling 10 month old. A PICC line? If so, how to keep him still??<br><br>UGH. And we start Tobi as soon as it gets here...*sigh*<br>
 
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CJPsMom

New member
I know the feeling. We got the call yesterday. Our 10 month old cultured for PA & acinetobacter (sp). We were already scheduled to be at the hospital this coming Monday for a bronchoscopy & endoscopy outpatient...but they told us to be prepared to stay for 2 weeks for IV meds.<br><br>Has anyone done the IV meds with a little one? We're just not sure how they're going to put & keep an IV in a crawling 10 month old. A PICC line? If so, how to keep him still??<br><br>UGH. And we start Tobi as soon as it gets here...*sigh*<br>
 
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Caro46

New member
Hi
When our daughter was 20 months, pseudomonas was detected in her sputum. She was on 3 months worth of Gentamiacin (nebulised) and Ciprofloxacin (oral), and in the 4 months since she finished the antibiotics (and 2 sputum tests), she's been clear. Also, hope I'm not jinxing it by saying this! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's 27 months now.
It is terrifying, but it's often the prospect of it that's scarier than the reality! Pseudomonas doesn't always mean disaster - if it picked up early enough, then it's very possible it can be eradicated... That's what we've been led to believe anyway...
Good luck!
 
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Caro46

New member
Hi
When our daughter was 20 months, pseudomonas was detected in her sputum. She was on 3 months worth of Gentamiacin (nebulised) and Ciprofloxacin (oral), and in the 4 months since she finished the antibiotics (and 2 sputum tests), she's been clear. Also, hope I'm not jinxing it by saying this! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's 27 months now.
It is terrifying, but it's often the prospect of it that's scarier than the reality! Pseudomonas doesn't always mean disaster - if it picked up early enough, then it's very possible it can be eradicated... That's what we've been led to believe anyway...
Good luck!
 
C

Caro46

New member
Hi
<br />When our daughter was 20 months, pseudomonas was detected in her sputum. She was on 3 months worth of Gentamiacin (nebulised) and Ciprofloxacin (oral), and in the 4 months since she finished the antibiotics (and 2 sputum tests), she's been clear. Also, hope I'm not jinxing it by saying this! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's 27 months now.
<br />It is terrifying, but it's often the prospect of it that's scarier than the reality! Pseudomonas doesn't always mean disaster - if it picked up early enough, then it's very possible it can be eradicated... That's what we've been led to believe anyway...
<br />Good luck!
 
R

Ratatosk

Administrator
Staff member
One thing about tobi is that it should "only" take about 20-25 minutes. When DS was put on tobi it took 45-50 minutes. Unfortunately, our compressor was faulty from day one, so treatments were a nightmare! Wasn't until a relative gave us a used compressor for use as a spare that we realized the issue.
 
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Ratatosk

Administrator
Staff member
One thing about tobi is that it should "only" take about 20-25 minutes. When DS was put on tobi it took 45-50 minutes. Unfortunately, our compressor was faulty from day one, so treatments were a nightmare! Wasn't until a relative gave us a used compressor for use as a spare that we realized the issue.
 
R

Ratatosk

Administrator
Staff member
One thing about tobi is that it should "only" take about 20-25 minutes. When DS was put on tobi it took 45-50 minutes. Unfortunately, our compressor was faulty from day one, so treatments were a nightmare! Wasn't until a relative gave us a used compressor for use as a spare that we realized the issue.
<br />
 
L

Larasmom

New member
The Tobi is taking about 25 minutes, so I guess that means the compressor is working correctly. Lara hates it. The older shes getting the harder time she gives me. All her treatments combined take about 2 hours a day, so between homework and that she doesn't get much free time since she goes to bed around 8:00 pm. I find myself sitting there answering the same question "is it done yet?" for the entire time.
CJP's Mom: Yes it is very scary, but, as you can see from the answers above the meds do work...thats a GREAT thing! As far as Collins hospital stay , I've been there, just bring lots of favorite toys and all your patience, the IV will stay put as long as they tape it up to a board the right way and hopefully he will do fine. I wouldn't let him off the bed, it just makes things worse cause then he will want to crawl aound. Hang in there!
Carolyn: That is awesome news! I will keep my fingers crossed for you too!
 
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