E
edan
Guest
Thanks everyone. Not exactly what I hoped to hear, but good knowledge anyway. I appreciate your feedback, once again.
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<br />Edan.
<br />
<br />Edan.
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My daughter was on flucloxacillin as a prophylactic (sp?) against staph from birth. That is a standard procedure for children at her clinic as staph is seen as something to be prevented and treated promptly when cultured. It is treated as aggressively as pseudomonas. For sixteen years she did not culture staph. I requested that she have a break from the preventative antibiotics and within a year she cultured a moderate growth of staph. Along with the culture she definitely had increased cough so it was definitely starting to cause problems.
Interestingly, her staph was still susceptible to the flucloxacillin despite sixteen years of use as a preventative. Her treatment has been to go back on the fluclox taking a therapeutic dose and then hopefully after a clear culture, go back to the preventative daily dose.
In all probability she probably had the staph in there all along but in such small numbers it never showed in any of her cultures. It is interesting to compare the way staph is viewed in America (we are from Australia).
As far as my daughter is concerned I agree with her treating specialist's view that staph can often be problematic and is something to be prevented if possible and treated aggressively when it shows up.
Interestingly, her staph was still susceptible to the flucloxacillin despite sixteen years of use as a preventative. Her treatment has been to go back on the fluclox taking a therapeutic dose and then hopefully after a clear culture, go back to the preventative daily dose.
In all probability she probably had the staph in there all along but in such small numbers it never showed in any of her cultures. It is interesting to compare the way staph is viewed in America (we are from Australia).
As far as my daughter is concerned I agree with her treating specialist's view that staph can often be problematic and is something to be prevented if possible and treated aggressively when it shows up.
My daughter was on flucloxacillin as a prophylactic (sp?) against staph from birth. That is a standard procedure for children at her clinic as staph is seen as something to be prevented and treated promptly when cultured. It is treated as aggressively as pseudomonas. For sixteen years she did not culture staph. I requested that she have a break from the preventative antibiotics and within a year she cultured a moderate growth of staph. Along with the culture she definitely had increased cough so it was definitely starting to cause problems.
Interestingly, her staph was still susceptible to the flucloxacillin despite sixteen years of use as a preventative. Her treatment has been to go back on the fluclox taking a therapeutic dose and then hopefully after a clear culture, go back to the preventative daily dose.
In all probability she probably had the staph in there all along but in such small numbers it never showed in any of her cultures. It is interesting to compare the way staph is viewed in America (we are from Australia).
As far as my daughter is concerned I agree with her treating specialist's view that staph can often be problematic and is something to be prevented if possible and treated aggressively when it shows up.
Interestingly, her staph was still susceptible to the flucloxacillin despite sixteen years of use as a preventative. Her treatment has been to go back on the fluclox taking a therapeutic dose and then hopefully after a clear culture, go back to the preventative daily dose.
In all probability she probably had the staph in there all along but in such small numbers it never showed in any of her cultures. It is interesting to compare the way staph is viewed in America (we are from Australia).
As far as my daughter is concerned I agree with her treating specialist's view that staph can often be problematic and is something to be prevented if possible and treated aggressively when it shows up.
<br />My daughter was on flucloxacillin as a prophylactic (sp?) against staph from birth. That is a standard procedure for children at her clinic as staph is seen as something to be prevented and treated promptly when cultured. It is treated as aggressively as pseudomonas. For sixteen years she did not culture staph. I requested that she have a break from the preventative antibiotics and within a year she cultured a moderate growth of staph. Along with the culture she definitely had increased cough so it was definitely starting to cause problems.
<br />
<br />Interestingly, her staph was still susceptible to the flucloxacillin despite sixteen years of use as a preventative. Her treatment has been to go back on the fluclox taking a therapeutic dose and then hopefully after a clear culture, go back to the preventative daily dose.
<br />
<br />In all probability she probably had the staph in there all along but in such small numbers it never showed in any of her cultures. It is interesting to compare the way staph is viewed in America (we are from Australia).
<br /> As far as my daughter is concerned I agree with her treating specialist's view that staph can often be problematic and is something to be prevented if possible and treated aggressively when it shows up.
<br />
<br />
<br />
<br />
<br />
<br />
<br />Interestingly, her staph was still susceptible to the flucloxacillin despite sixteen years of use as a preventative. Her treatment has been to go back on the fluclox taking a therapeutic dose and then hopefully after a clear culture, go back to the preventative daily dose.
<br />
<br />In all probability she probably had the staph in there all along but in such small numbers it never showed in any of her cultures. It is interesting to compare the way staph is viewed in America (we are from Australia).
<br /> As far as my daughter is concerned I agree with her treating specialist's view that staph can often be problematic and is something to be prevented if possible and treated aggressively when it shows up.
<br />
<br />
<br />
<br />
<br />
E
edan
Guest
Thanks Jen. My daughter's doctor said studies in Europe showed Treating staph was helpful but that when studied here, treating staph actually increased the likelihood of early acquisitiOn of pseudomonas. Such differing opinions makes one go CRAZY!
E
edan
Guest
Thanks Jen. My daughter's doctor said studies in Europe showed Treating staph was helpful but that when studied here, treating staph actually increased the likelihood of early acquisitiOn of pseudomonas. Such differing opinions makes one go CRAZY!
E
edan
Guest
Thanks Jen. My daughter's doctor said studies in Europe showed Treating staph was helpful but that when studied here, treating staph actually increased the likelihood of early acquisitiOn of pseudomonas. Such differing opinions makes one go CRAZY!
Hi Edan,
I have also heard of that opinion (treating staph increasing likelihood of aquisition of pseudomonas). I would like to see the evidence of this. Someone might be able to refer us to the results of a study in this regard.
At this stage, I can only go by our experience. My daughter has cultured pseudomonas before. She was treated and it has not shown in a culture for two years now. It really is hard to make the best decisions on behalf of our children with such different treating protocols from respected physicians.
I have also heard of that opinion (treating staph increasing likelihood of aquisition of pseudomonas). I would like to see the evidence of this. Someone might be able to refer us to the results of a study in this regard.
At this stage, I can only go by our experience. My daughter has cultured pseudomonas before. She was treated and it has not shown in a culture for two years now. It really is hard to make the best decisions on behalf of our children with such different treating protocols from respected physicians.
Hi Edan,
I have also heard of that opinion (treating staph increasing likelihood of aquisition of pseudomonas). I would like to see the evidence of this. Someone might be able to refer us to the results of a study in this regard.
At this stage, I can only go by our experience. My daughter has cultured pseudomonas before. She was treated and it has not shown in a culture for two years now. It really is hard to make the best decisions on behalf of our children with such different treating protocols from respected physicians.
I have also heard of that opinion (treating staph increasing likelihood of aquisition of pseudomonas). I would like to see the evidence of this. Someone might be able to refer us to the results of a study in this regard.
At this stage, I can only go by our experience. My daughter has cultured pseudomonas before. She was treated and it has not shown in a culture for two years now. It really is hard to make the best decisions on behalf of our children with such different treating protocols from respected physicians.
Hi Edan,
<br />I have also heard of that opinion (treating staph increasing likelihood of aquisition of pseudomonas). I would like to see the evidence of this. Someone might be able to refer us to the results of a study in this regard.
<br />
<br /> At this stage, I can only go by our experience. My daughter has cultured pseudomonas before. She was treated and it has not shown in a culture for two years now. It really is hard to make the best decisions on behalf of our children with such different treating protocols from respected physicians.
<br />
<br />
<br />I have also heard of that opinion (treating staph increasing likelihood of aquisition of pseudomonas). I would like to see the evidence of this. Someone might be able to refer us to the results of a study in this regard.
<br />
<br /> At this stage, I can only go by our experience. My daughter has cultured pseudomonas before. She was treated and it has not shown in a culture for two years now. It really is hard to make the best decisions on behalf of our children with such different treating protocols from respected physicians.
<br />
<br />
Piper started culturing mrsa when she was around 7, and her lung health has significantly declined since then. It has been a gradual decline, IVs a couple times a year, then three or four, and now (she's 10) we're doing IVs roughly every six weeks. It is the only thing she has cultured repeatedly, so nowhere else to put the blame. That said, there are different strains of staph, and I've never heard of any studies that looked at particular strains. It could very well be that the particular strain she has is one of the worst. Her lung function right now is in the 50's on a good day. We've also been fairly aggressive with it from the time it started causing problems. She's done daily bactrim (didn't seem to make a huge difference) and still does daily ibuprofen therapy, and azithro 3x weekly. She also rotates Cayston, TOBI, and Colistin. She cultured pseudo until she was 3, so there's also some thought that maybe she's still culturing pseudo and we're not seeing it on the cultures because of the mrsa. There are times it feels like we're throwing darts at an invisible dartboard, but I also hate to think what her lung function might be without all the various protocols we follow. Honestly, it bites, and I think there's been a big misconception here that staph isn't a big deal, though recent studies are starting to change people's minds.
Piper started culturing mrsa when she was around 7, and her lung health has significantly declined since then. It has been a gradual decline, IVs a couple times a year, then three or four, and now (she's 10) we're doing IVs roughly every six weeks. It is the only thing she has cultured repeatedly, so nowhere else to put the blame. That said, there are different strains of staph, and I've never heard of any studies that looked at particular strains. It could very well be that the particular strain she has is one of the worst. Her lung function right now is in the 50's on a good day. We've also been fairly aggressive with it from the time it started causing problems. She's done daily bactrim (didn't seem to make a huge difference) and still does daily ibuprofen therapy, and azithro 3x weekly. She also rotates Cayston, TOBI, and Colistin. She cultured pseudo until she was 3, so there's also some thought that maybe she's still culturing pseudo and we're not seeing it on the cultures because of the mrsa. There are times it feels like we're throwing darts at an invisible dartboard, but I also hate to think what her lung function might be without all the various protocols we follow. Honestly, it bites, and I think there's been a big misconception here that staph isn't a big deal, though recent studies are starting to change people's minds.
Piper started culturing mrsa when she was around 7, and her lung health has significantly declined since then. It has been a gradual decline, IVs a couple times a year, then three or four, and now (she's 10) we're doing IVs roughly every six weeks. It is the only thing she has cultured repeatedly, so nowhere else to put the blame. That said, there are different strains of staph, and I've never heard of any studies that looked at particular strains. It could very well be that the particular strain she has is one of the worst. Her lung function right now is in the 50's on a good day. We've also been fairly aggressive with it from the time it started causing problems. She's done daily bactrim (didn't seem to make a huge difference) and still does daily ibuprofen therapy, and azithro 3x weekly. She also rotates Cayston, TOBI, and Colistin. She cultured pseudo until she was 3, so there's also some thought that maybe she's still culturing pseudo and we're not seeing it on the cultures because of the mrsa. There are times it feels like we're throwing darts at an invisible dartboard, but I also hate to think what her lung function might be without all the various protocols we follow. Honestly, it bites, and I think there's been a big misconception here that staph isn't a big deal, though recent studies are starting to change people's minds.
E
edan
Guest
Amanda,
Thanks for your reply. I am so sorry to hear about Piper.
Thanks for your reply. I am so sorry to hear about Piper.
E
edan
Guest
Amanda,
Thanks for your reply. I am so sorry to hear about Piper.
Thanks for your reply. I am so sorry to hear about Piper.
E
edan
Guest
Amanda,
<br />
<br />Thanks for your reply. I am so sorry to hear about Piper.
<br />
<br />Thanks for your reply. I am so sorry to hear about Piper.
When Emily is healthy her staph just kind of hangs out and behaves itself for the most part. She's cultured it since her dx. When she's sick, though, she's really sick, and generally for a long time. I can pinpoint a couple major illnesses with secondary infections attributed to her staph that have resulted in permanent changes to her baseline symptoms. So yeah- it has indirectly caused some damage, but how much is hard to quantify, since the inflammation factor is also huge for her and has caused changes in her baseline as well.
Emily's healthy pft's are also very good. Not as good as your daughter's- those numbers are fantastic!!!! but very good. They decline quite a lot when sick and addressing both infection and inflammation is needed to get those numbers back up.
Oh, and we only treat hers when she is sick. I generally agree with this premise. The oral meds are systemic and affect other body systems, like the gi tract, and I don't like the idea of constantly hitting them with powerful abx when not necessarily needed. Her staph is also now resistant to most oral abx and I'd rather save the ones we have left for when they are really needed.
Emily's healthy pft's are also very good. Not as good as your daughter's- those numbers are fantastic!!!! but very good. They decline quite a lot when sick and addressing both infection and inflammation is needed to get those numbers back up.
Oh, and we only treat hers when she is sick. I generally agree with this premise. The oral meds are systemic and affect other body systems, like the gi tract, and I don't like the idea of constantly hitting them with powerful abx when not necessarily needed. Her staph is also now resistant to most oral abx and I'd rather save the ones we have left for when they are really needed.