I am so frustrated! Katie's (21 months old) throat culture came back + for non mucoid PA again! This is the 3rd time since Oct of 2008. The first time (Oct 08), we got rid of it with a month of the inhaled TOBI and 21 days of oral Cipro. The 2nd time (01/'08), the TOBI and Cipro didn't work, so in Feb we did 3 weeks of IV Tobramycin and Maxipime...after the IVs, the culture was negative. Then, we did a month of inhaled TOBI, just to be on the safe side.
Now, we just had the culture last week, + again! She is asymptomatic, has no cough, etc, so we don't have any clue she has it.
We have been doing GSH oral and inhaled since she was 5 months old. My gut tells me that the GSH isn't causing this, but then I get nervous and think otherwise. On one hand, I hope the GSH is supporting her lungs and helping her, but then I think that the GSH may be helping the PA grow more. How can I know? Also, I hate to stop inhaled GSH b/c it really helps thin her mucus. We will start the inhaled TOBI again, with the oral Cipro. I have always continued the inhaled GSH during the TOBI therapy. Maybe I should d/c GSH during this? Our CF docs don't know she's on GSH..they are not open to its use, so I can't discuss this with them.
Sorry this is so long, sometimes I vent...
Does anyone have any suggestions or thoughts? Any suggestions on prevention?
Thanks!