Guest guest Posted December 13, 2002 Report Share Posted December 13, 2002 , Thanks for the encouragement! What is colistin?? Is it like Tobi? I have heard a few people talk about it but never knew what it is. WE will stick with this and fight to get rid of the PA! Thanks > , > > Eilish hasn't cultured it for 2 years. But she was only 2 when she > first cultured it, and I thought it was the end of the world. So we > started on 3 months of Cipro. and Colistin and then had a broncoscopy to > see if its still there which it was so the 3 months was repeated again. > This cycle went on for 12 months, but it finally went and hasn't > reappeared. Stick with it. > > (Australia) > > Cutured positive for PA...new to Tobi..HELP! > > > Ok I need some help here. > > WE had a clinic visit last week. Hh has gained 3 pounds since > September and is now at the 50th percentile for height and weight. > They did a culture just to check. I was feeling pretty good about > her health...THat was a REALLY stupid thing to do..the minute I let > my guard down something always happens! Well I called today because > I had not heard yet and the news was not good! She has cultured PA. > I THOUGHT she had never cultured it before (no one had told us that > she did) but apparently almost 2 years ago she cultured for it but > then has not again until now. Thank God that our clinic has JUST > decided that whenever someone cultures PA they are going to try to > erradicate it. We will be starting Cipro and Tobi both twice a day > as soon as we can get the meds. Here are my questions: I know I can > give the Tobi AFTER her vest treatment (which I give her albuterol > during) but when I asked the respiratory therapist how much BEFORE > the vest treatment can I give it to her she did not know??? I want > to try to get the treatments about 12 hours apart and I am not sure > that her bedtime will be the best time. (I have to currently get her > up at 6am to do her morning routine but I wil have to add about 1/2 > hour to that now) So her 8pm bedtime may not be the best time to do > the Tobi. > > I would like to do it like at 6p.m. with her vest 1 hour to 1 1/2 > hours after it. Has anyone ever been told that they can do the Tobi > a given length of time BEFORE a vest treatment????? > > Also what else do I need to know about Tobi and Cipro? A friend said > she herad that you had to be careful when to give the Adeks with > these treatments???? The Clinic did not mention this? > > I am trying to focus on the fight but am really upset that she has > PA. I hoped that we could avoid it until much later (Hannah will be > 3 on January 11) I realize we have been very forunate so far in that > she has not been really respiratorally involved. Her only hospital > stay has been for Other cf problems. > > WE would appreciate ANY advice or words of wisdom. You can bet we > are going to focus on making this a GREAT Christmas and then mabye we > will find out that the meds worked and we got rid of the PA.. > > > Hugs to all the little ones!!! > > mommy to Hannah wcf and Tommy wocf/asthma > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
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