My dd also cultured staph since diagnosed at 2 m/o. She gets antibiotics when the count gets high (something like 10^6) even in the absence of any symptoms/cough. I guess the idea behind this is that staph is damaging to the lungs too. If i am not mistaken there is a member here with 2 kids and the kid with staph and no PA has more scarring than the one with PA.
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Bactrim if not coughing?
- Thread starter kitomd21
- Start date
My dd also cultured staph since diagnosed at 2 m/o. She gets antibiotics when the count gets high (something like 10^6) even in the absence of any symptoms/cough. I guess the idea behind this is that staph is damaging to the lungs too. If i am not mistaken there is a member here with 2 kids and the kid with staph and no PA has more scarring than the one with PA.
badcheesemomma
New member
My daughter has always cultured staph as well. For about a year now she alternates bactrim and doxycycline every month.
badcheesemomma
New member
My daughter has always cultured staph as well. For about a year now she alternates bactrim and doxycycline every month.
badcheesemomma
New member
My daughter has always cultured staph as well. For about a year now she alternates bactrim and doxycycline every month.
badcheesemomma
New member
She just currently had a nasty one that lasted about 3 weeks and turned into pneumonia, but she also had cultered PA anf aspergillus. Before the cultures came back she went on azithromax for 3 weeks and prednisolone for 5 days. She got worse, and when the cultures came back they added cipro and tobi. It took a week after that for her to feel good again, and she's just now back to herself. I haven't seen a change yet.
badcheesemomma
New member
She just currently had a nasty one that lasted about 3 weeks and turned into pneumonia, but she also had cultered PA anf aspergillus. Before the cultures came back she went on azithromax for 3 weeks and prednisolone for 5 days. She got worse, and when the cultures came back they added cipro and tobi. It took a week after that for her to feel good again, and she's just now back to herself. I haven't seen a change yet.
badcheesemomma
New member
She just currently had a nasty one that lasted about 3 weeks and turned into pneumonia, but she also had cultered PA anf aspergillus. Before the cultures came back she went on azithromax for 3 weeks and prednisolone for 5 days. She got worse, and when the cultures came back they added cipro and tobi. It took a week after that for her to feel good again, and she's just now back to herself. I haven't seen a change yet.
Emily's last really nasty exacerbation also turned into pneumonia. She was also on a high dose of Bactrim for 3wks (we treat her staph symptomatically) and they added zithromax for 10 days, since that can help with some of the atypical pneumonia strains and prednisone. She ended up on the pred. for a couple weeks; it was a really nasty illness for her and her baseline has been a little worse for the most part ever since. She's been on zithromax m/w/f since then for inflammation, and I don't know how that affects using it for bugs like pneumonia once you are on it long-term. We have been addressing the baseline symptoms with changing up her nebs and are considering adding HTS next. Emily has not yet cultured PA. She did culture a strange pseudomonas recently, but it was not of the aeruginosa strain; it was one that was sensitive to orals and we haven't seen it the last 2 cultures.
I hate the thought of abx when not symptomatic. It seems to go both ways on whether or not to treat certain bugs when not sick; the centers that feel the way they do have strong opinions either way and will turn to whatever studies back up their pov... it's hard to know for <i>sure</i> which stance is correct. It's a fine line- we want to keep our kids as healthy as possible, to discourage damage, yet not encourage drug resistance either. I don't think there is one right answer for everyone.
Our personal experience: Emily has been culturing staph at most visits since dx, and she cultures it whether she's been on abx recently or not. She was on whopping doses of multiple meds (oral and iv) this spring and summer and still cultured it just a few weeks after coming off the meds. It is now resistant to almost all oral abx, so I don't like the idea of treating all the time and losing sensitivity to what still works. But if her baseline symptoms kept worsening or if her upcoming ct scan looks worse than what they expect it to (her xray shows only mild changes), we'd obviously have to revisit that.
I hate the thought of abx when not symptomatic. It seems to go both ways on whether or not to treat certain bugs when not sick; the centers that feel the way they do have strong opinions either way and will turn to whatever studies back up their pov... it's hard to know for <i>sure</i> which stance is correct. It's a fine line- we want to keep our kids as healthy as possible, to discourage damage, yet not encourage drug resistance either. I don't think there is one right answer for everyone.
Our personal experience: Emily has been culturing staph at most visits since dx, and she cultures it whether she's been on abx recently or not. She was on whopping doses of multiple meds (oral and iv) this spring and summer and still cultured it just a few weeks after coming off the meds. It is now resistant to almost all oral abx, so I don't like the idea of treating all the time and losing sensitivity to what still works. But if her baseline symptoms kept worsening or if her upcoming ct scan looks worse than what they expect it to (her xray shows only mild changes), we'd obviously have to revisit that.
Emily's last really nasty exacerbation also turned into pneumonia. She was also on a high dose of Bactrim for 3wks (we treat her staph symptomatically) and they added zithromax for 10 days, since that can help with some of the atypical pneumonia strains and prednisone. She ended up on the pred. for a couple weeks; it was a really nasty illness for her and her baseline has been a little worse for the most part ever since. She's been on zithromax m/w/f since then for inflammation, and I don't know how that affects using it for bugs like pneumonia once you are on it long-term. We have been addressing the baseline symptoms with changing up her nebs and are considering adding HTS next. Emily has not yet cultured PA. She did culture a strange pseudomonas recently, but it was not of the aeruginosa strain; it was one that was sensitive to orals and we haven't seen it the last 2 cultures.
I hate the thought of abx when not symptomatic. It seems to go both ways on whether or not to treat certain bugs when not sick; the centers that feel the way they do have strong opinions either way and will turn to whatever studies back up their pov... it's hard to know for <i>sure</i> which stance is correct. It's a fine line- we want to keep our kids as healthy as possible, to discourage damage, yet not encourage drug resistance either. I don't think there is one right answer for everyone.
Our personal experience: Emily has been culturing staph at most visits since dx, and she cultures it whether she's been on abx recently or not. She was on whopping doses of multiple meds (oral and iv) this spring and summer and still cultured it just a few weeks after coming off the meds. It is now resistant to almost all oral abx, so I don't like the idea of treating all the time and losing sensitivity to what still works. But if her baseline symptoms kept worsening or if her upcoming ct scan looks worse than what they expect it to (her xray shows only mild changes), we'd obviously have to revisit that.
I hate the thought of abx when not symptomatic. It seems to go both ways on whether or not to treat certain bugs when not sick; the centers that feel the way they do have strong opinions either way and will turn to whatever studies back up their pov... it's hard to know for <i>sure</i> which stance is correct. It's a fine line- we want to keep our kids as healthy as possible, to discourage damage, yet not encourage drug resistance either. I don't think there is one right answer for everyone.
Our personal experience: Emily has been culturing staph at most visits since dx, and she cultures it whether she's been on abx recently or not. She was on whopping doses of multiple meds (oral and iv) this spring and summer and still cultured it just a few weeks after coming off the meds. It is now resistant to almost all oral abx, so I don't like the idea of treating all the time and losing sensitivity to what still works. But if her baseline symptoms kept worsening or if her upcoming ct scan looks worse than what they expect it to (her xray shows only mild changes), we'd obviously have to revisit that.
Emily's last really nasty exacerbation also turned into pneumonia. She was also on a high dose of Bactrim for 3wks (we treat her staph symptomatically) and they added zithromax for 10 days, since that can help with some of the atypical pneumonia strains and prednisone. She ended up on the pred. for a couple weeks; it was a really nasty illness for her and her baseline has been a little worse for the most part ever since. She's been on zithromax m/w/f since then for inflammation, and I don't know how that affects using it for bugs like pneumonia once you are on it long-term. We have been addressing the baseline symptoms with changing up her nebs and are considering adding HTS next. Emily has not yet cultured PA. She did culture a strange pseudomonas recently, but it was not of the aeruginosa strain; it was one that was sensitive to orals and we haven't seen it the last 2 cultures.
<br />
<br />I hate the thought of abx when not symptomatic. It seems to go both ways on whether or not to treat certain bugs when not sick; the centers that feel the way they do have strong opinions either way and will turn to whatever studies back up their pov... it's hard to know for <i>sure</i> which stance is correct. It's a fine line- we want to keep our kids as healthy as possible, to discourage damage, yet not encourage drug resistance either. I don't think there is one right answer for everyone.
<br />
<br />Our personal experience: Emily has been culturing staph at most visits since dx, and she cultures it whether she's been on abx recently or not. She was on whopping doses of multiple meds (oral and iv) this spring and summer and still cultured it just a few weeks after coming off the meds. It is now resistant to almost all oral abx, so I don't like the idea of treating all the time and losing sensitivity to what still works. But if her baseline symptoms kept worsening or if her upcoming ct scan looks worse than what they expect it to (her xray shows only mild changes), we'd obviously have to revisit that.
<br />
<br />I hate the thought of abx when not symptomatic. It seems to go both ways on whether or not to treat certain bugs when not sick; the centers that feel the way they do have strong opinions either way and will turn to whatever studies back up their pov... it's hard to know for <i>sure</i> which stance is correct. It's a fine line- we want to keep our kids as healthy as possible, to discourage damage, yet not encourage drug resistance either. I don't think there is one right answer for everyone.
<br />
<br />Our personal experience: Emily has been culturing staph at most visits since dx, and she cultures it whether she's been on abx recently or not. She was on whopping doses of multiple meds (oral and iv) this spring and summer and still cultured it just a few weeks after coming off the meds. It is now resistant to almost all oral abx, so I don't like the idea of treating all the time and losing sensitivity to what still works. But if her baseline symptoms kept worsening or if her upcoming ct scan looks worse than what they expect it to (her xray shows only mild changes), we'd obviously have to revisit that.
badcheesemomma
New member
I completely agree with overuse of anti's. I don't believe she needs to be alternating constant, as we haven't seen any difference with or without them. We are actually in the process of switching clinics because I'm very annoyed with the one we are at (been there since she was born). I feel as if they don't address the problem, or add unnecessary meds. Also it seems I ask a question and get a semi answer one week, then a month later I get the total opposite answer. I honestly believe she should have been put in the hospital this last time, but instead it was basically her being tied to a compressor, or her vest, or her popping pills 24/7 for weeks.
I would LOVE to add saline, but because of a study she is in we can't. Hopefully a lot of my questions will be answered this Tuesday. We are meeting the director at CHOP and I'm almost positive that's where we will stay, now if it wasn't a 3 hour drive! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I would LOVE to add saline, but because of a study she is in we can't. Hopefully a lot of my questions will be answered this Tuesday. We are meeting the director at CHOP and I'm almost positive that's where we will stay, now if it wasn't a 3 hour drive! <img src="i/expressions/face-icon-small-smile.gif" border="0">
badcheesemomma
New member
I completely agree with overuse of anti's. I don't believe she needs to be alternating constant, as we haven't seen any difference with or without them. We are actually in the process of switching clinics because I'm very annoyed with the one we are at (been there since she was born). I feel as if they don't address the problem, or add unnecessary meds. Also it seems I ask a question and get a semi answer one week, then a month later I get the total opposite answer. I honestly believe she should have been put in the hospital this last time, but instead it was basically her being tied to a compressor, or her vest, or her popping pills 24/7 for weeks.
I would LOVE to add saline, but because of a study she is in we can't. Hopefully a lot of my questions will be answered this Tuesday. We are meeting the director at CHOP and I'm almost positive that's where we will stay, now if it wasn't a 3 hour drive! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I would LOVE to add saline, but because of a study she is in we can't. Hopefully a lot of my questions will be answered this Tuesday. We are meeting the director at CHOP and I'm almost positive that's where we will stay, now if it wasn't a 3 hour drive! <img src="i/expressions/face-icon-small-smile.gif" border="0">
badcheesemomma
New member
I completely agree with overuse of anti's. I don't believe she needs to be alternating constant, as we haven't seen any difference with or without them. We are actually in the process of switching clinics because I'm very annoyed with the one we are at (been there since she was born). I feel as if they don't address the problem, or add unnecessary meds. Also it seems I ask a question and get a semi answer one week, then a month later I get the total opposite answer. I honestly believe she should have been put in the hospital this last time, but instead it was basically her being tied to a compressor, or her vest, or her popping pills 24/7 for weeks.
<br />I would LOVE to add saline, but because of a study she is in we can't. Hopefully a lot of my questions will be answered this Tuesday. We are meeting the director at CHOP and I'm almost positive that's where we will stay, now if it wasn't a 3 hour drive! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />I would LOVE to add saline, but because of a study she is in we can't. Hopefully a lot of my questions will be answered this Tuesday. We are meeting the director at CHOP and I'm almost positive that's where we will stay, now if it wasn't a 3 hour drive! <img src="i/expressions/face-icon-small-smile.gif" border="0">
We are making a 4hr drive to CHOP on Friday for my son to have NPD testing done. The center director is the one overseeing the research study. I am not sure if we will meet him or not; the clinic research coordinator will be administering the test. One of the adults here (LouLou) posted on my thread that she's gotten to know the director of the center pretty well and she likes him a lot. It sounds like a very good center. In any case, I'm sorry her current center isn't working well with you now. CF is too serious a condition to let this go... I wish the best with your 2nd opinion and hope she can get better care there.
We are making a 4hr drive to CHOP on Friday for my son to have NPD testing done. The center director is the one overseeing the research study. I am not sure if we will meet him or not; the clinic research coordinator will be administering the test. One of the adults here (LouLou) posted on my thread that she's gotten to know the director of the center pretty well and she likes him a lot. It sounds like a very good center. In any case, I'm sorry her current center isn't working well with you now. CF is too serious a condition to let this go... I wish the best with your 2nd opinion and hope she can get better care there.
We are making a 4hr drive to CHOP on Friday for my son to have NPD testing done. The center director is the one overseeing the research study. I am not sure if we will meet him or not; the clinic research coordinator will be administering the test. One of the adults here (LouLou) posted on my thread that she's gotten to know the director of the center pretty well and she likes him a lot. It sounds like a very good center. In any case, I'm sorry her current center isn't working well with you now. CF is too serious a condition to let this go... I wish the best with your 2nd opinion and hope she can get better care there.