Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 My 9 month old daughter, Abby had her 2nd clinic visit Tues. She had grown PA from the bronchoscopy that was done when she was diagnosed 4 mos. ago. They said they'd eradicated it with the treatment she received in the hospital (tobra IV, Tobi, Timentin). She grew none from throat culture at discharge nor at her clinic in March. The culture done Tues. has grown " a few non-mucoid gram neg. rods " that they want to grow out over the wknd. to make sure but they think it's probably PA. I understand the difference between mucoid and non- mucoid and that this is what they call " intermittent " colinization. They'll put her back on Tobi for 28 days. I've asked why she has this and what does it mean. My doctor said that the reason some get it easier is because of the difference in mucous. Her's is obviously the right medium for it to grow. What I wonder is this: How common is it for a CF baby like Abby to grow PA? How many of your chilren have grown it? I want to know how serious this is so we can decide whether or not to seek other opinions on her treatment. She is in the 90th percentile in her wt. and is the picture of health right now. She's had only one little cough since Feb 1st that Augmentin and Tobi cleared completely in less than a week, although we completed the course of Tobi. She just finished it 3 weeks ago. Please let me know your opinions. Thanks. Joe Reams Father of Kelsi 6 wo/cf, Chloe 2 wo/cf and Abby 9mos.w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Dear Joe, PA is very common and also very hard to get rid of. Most CF patients just live with it and treat it when it gets out of control. My daughter is 19 and first cultured it at 2 1/2 although she may have had it for a while before that. At the time the doctors were not trying to irradicate it and she really had no treatment of it, until she was about 5 and was sick and was put on cipro. She has had it treated off and on. When she was 13 it wasn't found on her culture and hasn't been since then, I still think it is probably there but in low amounts. She cultures Stenotrophomonas maltophilia and staph now. Maybe those 2 are masking the PA. I don't know. The important thing is that your daughter is doing well. I wouldn't worry about totally irradicating the PA. It will probably always be there or sometimes it may come and go. It's kind of impossible to be sure. I hope this helps a little. love, M mom of age 19 wcf and Nick age 21 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2003 Report Share Posted May 18, 2003 My granddaughter " Abby| " , also has CF. Our Abby is 17 months old. She does not culture positive for PA, but always has a cough (mostly when she's active). She is in the 25th percentile for weight. I would love to see her hit the 90th percentile, like your Abby. Take care, Gale > My 9 month old daughter, Abby had her 2nd clinic visit Tues. She had > grown PA from the bronchoscopy that was done when she was diagnosed 4 > mos. ago. They said they'd eradicated it with the treatment she > received in the hospital (tobra IV, Tobi, Timentin). She grew none > from throat culture at discharge nor at her clinic in March. The > culture done Tues. has grown " a few non-mucoid gram neg. rods " that > they want to grow out over the wknd. to make sure but they think it's > probably PA. I understand the difference between mucoid and non- > mucoid and that this is what they call " intermittent " colinization. > They'll put her back on Tobi for 28 days. I've asked why she has > this and what does it mean. My doctor said that the reason some get > it easier is because of the difference in mucous. Her's is obviously > the right medium for it to grow. What I wonder is this: How common > is it for a CF baby like Abby to grow PA? How many of your chilren > have grown it? I want to know how serious this is so we can decide > whether or not to seek other opinions on her treatment. She is in > the 90th percentile in her wt. and is the picture of health right > now. She's had only one little cough since Feb 1st that Augmentin > and Tobi cleared completely in less than a week, although we > completed the course of Tobi. She just finished it 3 weeks ago. > Please let me know your opinions. Thanks. > > Joe Reams > Father of Kelsi 6 wo/cf, Chloe 2 wo/cf and Abby 9mos.w/cf Quote Link to comment Share on other sites More sharing options...
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