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Cystic Fibrosis Forum (EXP)

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Hiya Liz

anonymous

New member
So am I lately! What are we like 'eh?! How's it going?

Charlotte<img src="i/expressions/face-icon-small-cool.gif" border="0">
 

anonymous

New member
So am I lately! What are we like 'eh?! How's it going?

Charlotte<img src="i/expressions/face-icon-small-cool.gif" border="0">
 

thelizardqueen

New member
Its going. I have my checkup tomorrow, so I'm hoping for some good news. I'm just wondering if you've registered on the forum? Like with a username and password? If so, you can always send me private messages on here as well. How is your daughter doing?
 

thelizardqueen

New member
Its going. I have my checkup tomorrow, so I'm hoping for some good news. I'm just wondering if you've registered on the forum? Like with a username and password? If so, you can always send me private messages on here as well. How is your daughter doing?
 

anonymous

New member
Yeah, I have registered but 4 some reason my user name isn't showing up! Just my luck. Got an e-mail back off the Administrator accepting my details, been logging on everytime I use the Forum but doesn't seem to be working?! My daughter is doing fine thanks. She is doing amazing with the nebuliser. Has been on Cipro for nearly a week - another 2 weeks to go, then they will be doing another cough swab again.
 

anonymous

New member
Yeah, I have registered but 4 some reason my user name isn't showing up! Just my luck. Got an e-mail back off the Administrator accepting my details, been logging on everytime I use the Forum but doesn't seem to be working?! My daughter is doing fine thanks. She is doing amazing with the nebuliser. Has been on Cipro for nearly a week - another 2 weeks to go, then they will be doing another cough swab again.
 

thelizardqueen

New member
Is she still on TOBI as well? If you don't mind my asking - and you may be repeating yourself, but old was she when she first cultured Pseudo? How old is she now?
 

thelizardqueen

New member
Is she still on TOBI as well? If you don't mind my asking - and you may be repeating yourself, but old was she when she first cultured Pseudo? How old is she now?
 

anonymous

New member
Don't mind you asking at all. She has never been on Tobi - just Colomycin. Cultured PA when she was 10 months old - took 2 or 3 weeks of Cipro, can't remember now and Colomycin for just over 4 months. When the Hospital had had enough clear cough swabs, she was clear again up until exactly 12 months later. Cultured PA again when she was 1 year and 10 months old, so she was back on the Cipro for 3 weeks again and Colomycin. Been on it since last October. Had her Annual Review a couple of weeks ago and they told us that if the next cough swab was clear, then she could stop the neb for a while. Much to our disappointment PA showed up again so she is back on Cipro for another 3 weeks and continuing neb. Hope this makes sense!

Charlotte<img src="i/expressions/face-icon-small-frown.gif" border="0">
 

anonymous

New member
Don't mind you asking at all. She has never been on Tobi - just Colomycin. Cultured PA when she was 10 months old - took 2 or 3 weeks of Cipro, can't remember now and Colomycin for just over 4 months. When the Hospital had had enough clear cough swabs, she was clear again up until exactly 12 months later. Cultured PA again when she was 1 year and 10 months old, so she was back on the Cipro for 3 weeks again and Colomycin. Been on it since last October. Had her Annual Review a couple of weeks ago and they told us that if the next cough swab was clear, then she could stop the neb for a while. Much to our disappointment PA showed up again so she is back on Cipro for another 3 weeks and continuing neb. Hope this makes sense!

Charlotte<img src="i/expressions/face-icon-small-frown.gif" border="0">
 

thelizardqueen

New member
Is she sick with a chest infection? Is that why she's taking Cipro, or is it just because she's got Pseudo in her culture? Once Pseduo has colonized, you cannot get rid of it. Apparently if she's shown continual Pseudo for 26 months, then this means that she's got Pseudo permanently. I'm sure your doctors know what they are doing, but I'm a big advocate of not taking drugs when you don't need them, so as not to build up a resistance. It would just worry me, if she were continually on Cipro when she's not got an active chest infection. Most often then not, when us CFer's cough stuff up, and we already have Pseudo, the PA will be present in our cultures, but this doesn't mean that we are on treatment. My understanding is that Cipro or other antibiotics are for treating infections, and not for when she is sick. My doctors never want to put me on any antibiotic unless I am activly sick with an infection. That being said, these are my own thoughts, and in no way am I saying your doctor is wrong.
 

thelizardqueen

New member
Is she sick with a chest infection? Is that why she's taking Cipro, or is it just because she's got Pseudo in her culture? Once Pseduo has colonized, you cannot get rid of it. Apparently if she's shown continual Pseudo for 26 months, then this means that she's got Pseudo permanently. I'm sure your doctors know what they are doing, but I'm a big advocate of not taking drugs when you don't need them, so as not to build up a resistance. It would just worry me, if she were continually on Cipro when she's not got an active chest infection. Most often then not, when us CFer's cough stuff up, and we already have Pseudo, the PA will be present in our cultures, but this doesn't mean that we are on treatment. My understanding is that Cipro or other antibiotics are for treating infections, and not for when she is sick. My doctors never want to put me on any antibiotic unless I am activly sick with an infection. That being said, these are my own thoughts, and in no way am I saying your doctor is wrong.
 

anonymous

New member
Only reason she is taking Cipro is cos she has Pseudo in her culture. Apart from that she seems ok (touch wood). I am just a bit anxious as she has been on it for a long time.

Charlotte
 

anonymous

New member
Only reason she is taking Cipro is cos she has Pseudo in her culture. Apart from that she seems ok (touch wood). I am just a bit anxious as she has been on it for a long time.

Charlotte
 

anonymous

New member
Ps What you have just said has got me thinking now?!! I can understand exactly what you mean, but I just try and trust the Docs. I might mention this to them and see what they say. <img src="i/expressions/face-icon-small-confused.gif" border="0">
 

anonymous

New member
Ps What you have just said has got me thinking now?!! I can understand exactly what you mean, but I just try and trust the Docs. I might mention this to them and see what they say. <img src="i/expressions/face-icon-small-confused.gif" border="0">
 
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