I hope everyone is doing well. I've been lurking around for a while and am finally getting the nerve to post something (I had another screenname years ago but cant get into it on here so I made up another one)<div> Pseudomonas. Pseudomonas.Pseudomonas.</div><div>The word that passes through my thoughts at least 100 x's a day. My 10 year old daughter cultured it for the first time about 2 weeks ago.......just looking for some insight on what could be ahead of her, as far as treatments, does it go away? etc.....I researched it on the web, and get alot of medical info, but I would appreciate if I could get some of your personal experiences with it. </div><div>I think the shock of hearing it from her Doc is finally wearing off and my brain can connect with my fingers again.</div><div>Thanks,</div><div>Marie</div>
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- Thread starter Larasmom
- Start date
I hope everyone is doing well. I've been lurking around for a while and am finally getting the nerve to post something (I had another screenname years ago but cant get into it on here so I made up another one)Pseudomonas. Pseudomonas.Pseudomonas.The word that passes through my thoughts at least 100 x's a day. My 10 year old daughter cultured it for the first time about 2 weeks ago.......just looking for some insight on what could be ahead of her, as far as treatments, does it go away? etc.....I researched it on the web, and get alot of medical info, but I would appreciate if I could get some of your personal experiences with it.I think the shock of hearing it from her Doc is finally wearing off and my brain can connect with my fingers again.Thanks,Marie
I hope everyone is doing well. I've been lurking around for a while and am finally getting the nerve to post something (I had another screenname years ago but cant get into it on here so I made up another one)Pseudomonas. Pseudomonas.Pseudomonas.The word that passes through my thoughts at least 100 x's a day. My 10 year old daughter cultured it for the first time about 2 weeks ago.......just looking for some insight on what could be ahead of her, as far as treatments, does it go away? etc.....I researched it on the web, and get alot of medical info, but I would appreciate if I could get some of your personal experiences with it.I think the shock of hearing it from her Doc is finally wearing off and my brain can connect with my fingers again.Thanks,Marie
For us it was something that every one spoke about being in the distant future -- that someday DS would most likely culture it, would probably be put on tobi. Unfortunately, he cultured nonmucoid pseudo at 3 months. For us it was as if we'd gotten the CF diagnosis all over again, hit home that he really DID have cf. He had no symptoms. Was prescribed tobi. Sometimes iv abx are prescribed. When DS was 4 and developed a junky cough, he was put on cipro.
Stuff online was scary. We worried that this meant a decline in health.. He cultured it off and on for the first couple years. Was actually the healthiest child at his daycare, other than a couple ear infections and a stomach bug as a toddler, he really didn't suffer any ill effects.
Stuff online was scary. We worried that this meant a decline in health.. He cultured it off and on for the first couple years. Was actually the healthiest child at his daycare, other than a couple ear infections and a stomach bug as a toddler, he really didn't suffer any ill effects.
For us it was something that every one spoke about being in the distant future -- that someday DS would most likely culture it, would probably be put on tobi. Unfortunately, he cultured nonmucoid pseudo at 3 months. For us it was as if we'd gotten the CF diagnosis all over again, hit home that he really DID have cf. He had no symptoms. Was prescribed tobi. Sometimes iv abx are prescribed. When DS was 4 and developed a junky cough, he was put on cipro.
Stuff online was scary. We worried that this meant a decline in health.. He cultured it off and on for the first couple years. Was actually the healthiest child at his daycare, other than a couple ear infections and a stomach bug as a toddler, he really didn't suffer any ill effects.
Stuff online was scary. We worried that this meant a decline in health.. He cultured it off and on for the first couple years. Was actually the healthiest child at his daycare, other than a couple ear infections and a stomach bug as a toddler, he really didn't suffer any ill effects.
For us it was something that every one spoke about being in the distant future -- that someday DS would most likely culture it, would probably be put on tobi. Unfortunately, he cultured nonmucoid pseudo at 3 months. For us it was as if we'd gotten the CF diagnosis all over again, hit home that he really DID have cf. He had no symptoms. Was prescribed tobi. Sometimes iv abx are prescribed. When DS was 4 and developed a junky cough, he was put on cipro.
<br />
<br />Stuff online was scary. We worried that this meant a decline in health.. He cultured it off and on for the first couple years. Was actually the healthiest child at his daycare, other than a couple ear infections and a stomach bug as a toddler, he really didn't suffer any ill effects.
<br />
<br />Stuff online was scary. We worried that this meant a decline in health.. He cultured it off and on for the first couple years. Was actually the healthiest child at his daycare, other than a couple ear infections and a stomach bug as a toddler, he really didn't suffer any ill effects.
Both of my kids have cultured it. They both did 2 weeks of IV tobramycin and ceftaz, and started inhaled tobi. DS hasn't cultured it for over a year now, but DD still does. It hasn't caused any increase in symptoms or decrease in lung function. We do Tobi 28 days on/28 days off, and they take azithromycin mon, wed, fri.
It can go away, especially if they catch it early. After a year of not culturing it, they let DS stop the tobi but he still takes the azithromycin. Sometimes it shows up in DD's cultures and sometimes it doesn't.
Also, our clinic no longer does 2 weeks of IVs at first PA culture, they have switched to oral cipro and inhaled Tobi. I guess it showed to be as effective in studies.
It can go away, especially if they catch it early. After a year of not culturing it, they let DS stop the tobi but he still takes the azithromycin. Sometimes it shows up in DD's cultures and sometimes it doesn't.
Also, our clinic no longer does 2 weeks of IVs at first PA culture, they have switched to oral cipro and inhaled Tobi. I guess it showed to be as effective in studies.
Both of my kids have cultured it. They both did 2 weeks of IV tobramycin and ceftaz, and started inhaled tobi. DS hasn't cultured it for over a year now, but DD still does. It hasn't caused any increase in symptoms or decrease in lung function. We do Tobi 28 days on/28 days off, and they take azithromycin mon, wed, fri.
It can go away, especially if they catch it early. After a year of not culturing it, they let DS stop the tobi but he still takes the azithromycin. Sometimes it shows up in DD's cultures and sometimes it doesn't.
Also, our clinic no longer does 2 weeks of IVs at first PA culture, they have switched to oral cipro and inhaled Tobi. I guess it showed to be as effective in studies.
It can go away, especially if they catch it early. After a year of not culturing it, they let DS stop the tobi but he still takes the azithromycin. Sometimes it shows up in DD's cultures and sometimes it doesn't.
Also, our clinic no longer does 2 weeks of IVs at first PA culture, they have switched to oral cipro and inhaled Tobi. I guess it showed to be as effective in studies.
Both of my kids have cultured it. They both did 2 weeks of IV tobramycin and ceftaz, and started inhaled tobi. DS hasn't cultured it for over a year now, but DD still does. It hasn't caused any increase in symptoms or decrease in lung function. We do Tobi 28 days on/28 days off, and they take azithromycin mon, wed, fri.
<br />It can go away, especially if they catch it early. After a year of not culturing it, they let DS stop the tobi but he still takes the azithromycin. Sometimes it shows up in DD's cultures and sometimes it doesn't.
<br />Also, our clinic no longer does 2 weeks of IVs at first PA culture, they have switched to oral cipro and inhaled Tobi. I guess it showed to be as effective in studies.
<br />It can go away, especially if they catch it early. After a year of not culturing it, they let DS stop the tobi but he still takes the azithromycin. Sometimes it shows up in DD's cultures and sometimes it doesn't.
<br />Also, our clinic no longer does 2 weeks of IVs at first PA culture, they have switched to oral cipro and inhaled Tobi. I guess it showed to be as effective in studies.
I totally agree that Pseudomonas is scary. You hear nothing but horror stories and when our daughter was diagnosed at 5 and did not culture it the doctor told us he was "thrilled" that she didn't have it. Made us really think that getting it would be REALLY BAD.
I actually just found out at her last appointment that she cultured it back in January of 2010 and we never knew. I started to get upset that we weren't told, but then realized that she has had 2 cultures since then and it did not show up in either one. Now, she has been through an clean out so that's probably what got rid of it. But for now it is gone.
That's my Pseudomonas story, hope it helps?
I actually just found out at her last appointment that she cultured it back in January of 2010 and we never knew. I started to get upset that we weren't told, but then realized that she has had 2 cultures since then and it did not show up in either one. Now, she has been through an clean out so that's probably what got rid of it. But for now it is gone.
That's my Pseudomonas story, hope it helps?
I totally agree that Pseudomonas is scary. You hear nothing but horror stories and when our daughter was diagnosed at 5 and did not culture it the doctor told us he was "thrilled" that she didn't have it. Made us really think that getting it would be REALLY BAD.
I actually just found out at her last appointment that she cultured it back in January of 2010 and we never knew. I started to get upset that we weren't told, but then realized that she has had 2 cultures since then and it did not show up in either one. Now, she has been through an clean out so that's probably what got rid of it. But for now it is gone.
That's my Pseudomonas story, hope it helps?
I actually just found out at her last appointment that she cultured it back in January of 2010 and we never knew. I started to get upset that we weren't told, but then realized that she has had 2 cultures since then and it did not show up in either one. Now, she has been through an clean out so that's probably what got rid of it. But for now it is gone.
That's my Pseudomonas story, hope it helps?
I totally agree that Pseudomonas is scary. You hear nothing but horror stories and when our daughter was diagnosed at 5 and did not culture it the doctor told us he was "thrilled" that she didn't have it. Made us really think that getting it would be REALLY BAD.
<br />I actually just found out at her last appointment that she cultured it back in January of 2010 and we never knew. I started to get upset that we weren't told, but then realized that she has had 2 cultures since then and it did not show up in either one. Now, she has been through an clean out so that's probably what got rid of it. But for now it is gone.
<br />That's my Pseudomonas story, hope it helps?
<br />I actually just found out at her last appointment that she cultured it back in January of 2010 and we never knew. I started to get upset that we weren't told, but then realized that she has had 2 cultures since then and it did not show up in either one. Now, she has been through an clean out so that's probably what got rid of it. But for now it is gone.
<br />That's my Pseudomonas story, hope it helps?
I am a 71 yr old female, dx w/PA age 69, dx w/ cf at 70 through sweat tests, unknown mutations.
Last 3 months sputum test were negative for PA, but my dr said it could lie dormant , and flare up
again. I had PICC line IV's of cefePIME antibiotics. I am now on Cayston 28 days alternating Tobi
28 days through Nebulizer; Pulmicort 2x daily,DuoNeb 4X DAILY, Foradil 2x daily and Azithromycin
3x weekly. It keeps me busy medicating, but I think it is helping. Feeling better than before my
diagnosis, I had history of resp problems.
Don't know if PA is curable or not, good luck
------------------------
cf71:cf dx @70
Last 3 months sputum test were negative for PA, but my dr said it could lie dormant , and flare up
again. I had PICC line IV's of cefePIME antibiotics. I am now on Cayston 28 days alternating Tobi
28 days through Nebulizer; Pulmicort 2x daily,DuoNeb 4X DAILY, Foradil 2x daily and Azithromycin
3x weekly. It keeps me busy medicating, but I think it is helping. Feeling better than before my
diagnosis, I had history of resp problems.
Don't know if PA is curable or not, good luck
------------------------
cf71:cf dx @70
I am a 71 yr old female, dx w/PA age 69, dx w/ cf at 70 through sweat tests, unknown mutations.
Last 3 months sputum test were negative for PA, but my dr said it could lie dormant , and flare up
again. I had PICC line IV's of cefePIME antibiotics. I am now on Cayston 28 days alternating Tobi
28 days through Nebulizer; Pulmicort 2x daily,DuoNeb 4X DAILY, Foradil 2x daily and Azithromycin
3x weekly. It keeps me busy medicating, but I think it is helping. Feeling better than before my
diagnosis, I had history of resp problems.
Don't know if PA is curable or not, good luck
------------------------
cf71:cf dx @70
Last 3 months sputum test were negative for PA, but my dr said it could lie dormant , and flare up
again. I had PICC line IV's of cefePIME antibiotics. I am now on Cayston 28 days alternating Tobi
28 days through Nebulizer; Pulmicort 2x daily,DuoNeb 4X DAILY, Foradil 2x daily and Azithromycin
3x weekly. It keeps me busy medicating, but I think it is helping. Feeling better than before my
diagnosis, I had history of resp problems.
Don't know if PA is curable or not, good luck
------------------------
cf71:cf dx @70
I am a 71 yr old female, dx w/PA age 69, dx w/ cf at 70 through sweat tests, unknown mutations.
<br />Last 3 months sputum test were negative for PA, but my dr said it could lie dormant , and flare up
<br />again. I had PICC line IV's of cefePIME antibiotics. I am now on Cayston 28 days alternating Tobi
<br />28 days through Nebulizer; Pulmicort 2x daily,DuoNeb 4X DAILY, Foradil 2x daily and Azithromycin
<br />3x weekly. It keeps me busy medicating, but I think it is helping. Feeling better than before my
<br />diagnosis, I had history of resp problems.
<br />
<br />Don't know if PA is curable or not, good luck
<br />
<br />
<br />------------------------
<br />cf71:cf dx @70
<br />Last 3 months sputum test were negative for PA, but my dr said it could lie dormant , and flare up
<br />again. I had PICC line IV's of cefePIME antibiotics. I am now on Cayston 28 days alternating Tobi
<br />28 days through Nebulizer; Pulmicort 2x daily,DuoNeb 4X DAILY, Foradil 2x daily and Azithromycin
<br />3x weekly. It keeps me busy medicating, but I think it is helping. Feeling better than before my
<br />diagnosis, I had history of resp problems.
<br />
<br />Don't know if PA is curable or not, good luck
<br />
<br />
<br />------------------------
<br />cf71:cf dx @70
T
tammykrumrey
Guest
My younger daughter cultured PA about 5 years ago. She did inhaled Tobi and oral Cipro, 2 months of both, and has not cultured it since. She is 12 years old, FEV 100% <img src="i/expressions/face-icon-small-smile.gif" border="0"> My older daughter just cultured it last month, has done Tobi and Cipro, but haven't had another culture since then. She seems to be doing well. She is 13 years old, and an FEV of 90% <img src="i/expressions/face-icon-small-smile.gif" border="0"> I was very worried too, back 5 years ago when my little one started culturing it. But all has been ok.
I wasn't so concerned when my older one started culturing it. She started culturing B. Cepacia two years ago, and that one really threw me for a loop!!
I wasn't so concerned when my older one started culturing it. She started culturing B. Cepacia two years ago, and that one really threw me for a loop!!
T
tammykrumrey
Guest
My younger daughter cultured PA about 5 years ago. She did inhaled Tobi and oral Cipro, 2 months of both, and has not cultured it since. She is 12 years old, FEV 100% <img src="i/expressions/face-icon-small-smile.gif" border="0"> My older daughter just cultured it last month, has done Tobi and Cipro, but haven't had another culture since then. She seems to be doing well. She is 13 years old, and an FEV of 90% <img src="i/expressions/face-icon-small-smile.gif" border="0"> I was very worried too, back 5 years ago when my little one started culturing it. But all has been ok.
I wasn't so concerned when my older one started culturing it. She started culturing B. Cepacia two years ago, and that one really threw me for a loop!!
I wasn't so concerned when my older one started culturing it. She started culturing B. Cepacia two years ago, and that one really threw me for a loop!!