Okay, almost in tears-frustrated

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BabyBeauty

New member
Okay I am feeling better about this. I guess I misunderstood that if you have psuedo then you go straight to the hospital and there were no questions. I didn't realized you could keep on TOBI or do home IV's. We are learning as we go....
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<br />Thank God for this site! I don't know what I would do without my second opinions!!!!
 
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kalebsmommy

New member
Hi BabyBeauty <img src="i/expressions/face-icon-small-smile.gif" border="0"> My son has just cultured Pseudomonas for the 2nd time and I know how you feel. Its always disheartening when you hear the news. His doctor says it is nonmucoid and put us back on a round of Tobi and Cipro. The first time he cultured it he was on both medicines for months before he got rid of it. But he has never put Kaleb in the hospital for culturing it...He also said it wasn't a great amount he was culturing either and that he thought we could erradicate it. I would just talk about the way your feeling and ask any questions you have with the cf team, they always make me feel 100% better when I'm freaking out. It can be so confusing, scary and stressful sometimes and having things explained and all your questions answered can sure put you at ease. I hope everyones answers have calmed you a little and I really hope I have encouraged you a little bit. The answsers here actually helped to inform me as well! I'm sure your doing everything you can to the best of your abilities and I know it is helping your little one tremendously. I'll send some prayers of strength and encouragement up for you! *hugg to ya* <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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kalebsmommy

New member
Hi BabyBeauty <img src="i/expressions/face-icon-small-smile.gif" border="0"> My son has just cultured Pseudomonas for the 2nd time and I know how you feel. Its always disheartening when you hear the news. His doctor says it is nonmucoid and put us back on a round of Tobi and Cipro. The first time he cultured it he was on both medicines for months before he got rid of it. But he has never put Kaleb in the hospital for culturing it...He also said it wasn't a great amount he was culturing either and that he thought we could erradicate it. I would just talk about the way your feeling and ask any questions you have with the cf team, they always make me feel 100% better when I'm freaking out. It can be so confusing, scary and stressful sometimes and having things explained and all your questions answered can sure put you at ease. I hope everyones answers have calmed you a little and I really hope I have encouraged you a little bit. The answsers here actually helped to inform me as well! I'm sure your doing everything you can to the best of your abilities and I know it is helping your little one tremendously. I'll send some prayers of strength and encouragement up for you! *hugg to ya* <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kalebsmommy

New member
Hi BabyBeauty <img src="i/expressions/face-icon-small-smile.gif" border="0"> My son has just cultured Pseudomonas for the 2nd time and I know how you feel. Its always disheartening when you hear the news. His doctor says it is nonmucoid and put us back on a round of Tobi and Cipro. The first time he cultured it he was on both medicines for months before he got rid of it. But he has never put Kaleb in the hospital for culturing it...He also said it wasn't a great amount he was culturing either and that he thought we could erradicate it. I would just talk about the way your feeling and ask any questions you have with the cf team, they always make me feel 100% better when I'm freaking out. It can be so confusing, scary and stressful sometimes and having things explained and all your questions answered can sure put you at ease. I hope everyones answers have calmed you a little and I really hope I have encouraged you a little bit. The answsers here actually helped to inform me as well! I'm sure your doing everything you can to the best of your abilities and I know it is helping your little one tremendously. I'll send some prayers of strength and encouragement up for you! *hugg to ya* <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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LouLou

New member
Ask him if not the hospital then what is his protocol. It is most likely like others have mentioned the Tobi combined with Cipro method. The two methods Tobi/Cipro vs. IV Tobra and ??) are in a trial. He should be able to explain where the trials stand and how the results are looking. If he gets bit_chy with you, confront him by telling him you want to understand and if he doesn't work with you and take time to explain things take your biz elsewhere.
 
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LouLou

New member
Ask him if not the hospital then what is his protocol. It is most likely like others have mentioned the Tobi combined with Cipro method. The two methods Tobi/Cipro vs. IV Tobra and ??) are in a trial. He should be able to explain where the trials stand and how the results are looking. If he gets bit_chy with you, confront him by telling him you want to understand and if he doesn't work with you and take time to explain things take your biz elsewhere.
 
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LouLou

New member
Ask him if not the hospital then what is his protocol. It is most likely like others have mentioned the Tobi combined with Cipro method. The two methods Tobi/Cipro vs. IV Tobra and ??) are in a trial. He should be able to explain where the trials stand and how the results are looking. If he gets bit_chy with you, confront him by telling him you want to understand and if he doesn't work with you and take time to explain things take your biz elsewhere.
 
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froggymama

New member
My daughter cultured it twice and has been pseudomonas free for a year now! We did Cipro for 14 days and a year of Tobi each time she cultured. Tobi was 2 months on, then one month on/off for a year. Good luck. Don't get too discouraged. Plus there are new inhaled antibiotics in the pipeline! xoxo Elise
 
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froggymama

New member
My daughter cultured it twice and has been pseudomonas free for a year now! We did Cipro for 14 days and a year of Tobi each time she cultured. Tobi was 2 months on, then one month on/off for a year. Good luck. Don't get too discouraged. Plus there are new inhaled antibiotics in the pipeline! xoxo Elise
 
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froggymama

New member
My daughter cultured it twice and has been pseudomonas free for a year now! We did Cipro for 14 days and a year of Tobi each time she cultured. Tobi was 2 months on, then one month on/off for a year. Good luck. Don't get too discouraged. Plus there are new inhaled antibiotics in the pipeline! xoxo Elise
 
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LisaGreene

New member
My son had his first psued culture at age 2 and is now 11 and doing fine. It's NOT the beginning of the end - which is what I thought and was in tears, too.

Back then, he got Cipro only and that helped. Psued went away a long time. Then came back, we eradicated it again, then came back - on and on- now it's here to stay but it cultures very light meaning not a heavy concentration and non-mucoid.

We do Tobi on/ Tobi off now and he is doing fine. I THINK the research shows that Tobi alone is just as effective at eradication as Tobi and Cipro combined. Ask your docs about that. Cipro can have very nasty side effects. Above all, keep up your hope.
Hugs,
Lisa
 
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LisaGreene

New member
My son had his first psued culture at age 2 and is now 11 and doing fine. It's NOT the beginning of the end - which is what I thought and was in tears, too.

Back then, he got Cipro only and that helped. Psued went away a long time. Then came back, we eradicated it again, then came back - on and on- now it's here to stay but it cultures very light meaning not a heavy concentration and non-mucoid.

We do Tobi on/ Tobi off now and he is doing fine. I THINK the research shows that Tobi alone is just as effective at eradication as Tobi and Cipro combined. Ask your docs about that. Cipro can have very nasty side effects. Above all, keep up your hope.
Hugs,
Lisa
 
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LisaGreene

New member
My son had his first psued culture at age 2 and is now 11 and doing fine. It's NOT the beginning of the end - which is what I thought and was in tears, too.
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<br />Back then, he got Cipro only and that helped. Psued went away a long time. Then came back, we eradicated it again, then came back - on and on- now it's here to stay but it cultures very light meaning not a heavy concentration and non-mucoid.
<br />
<br />We do Tobi on/ Tobi off now and he is doing fine. I THINK the research shows that Tobi alone is just as effective at eradication as Tobi and Cipro combined. Ask your docs about that. Cipro can have very nasty side effects. Above all, keep up your hope.
<br />Hugs,
<br />Lisa
 
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