Pseudomonas?

M

mom2cameron

New member
Sorry I have been away...we just got Camerons new culture results back Wednesday...no pseudo! I still feel like its not true for some strange reason though. (I keep thinking maybe he didn't give a good enough culture sample) Hope its not hiding way down in there. He didn't have any symptoms with it at all which I think made it a bit more bearable on my mental state <img src="i/expressions/face-icon-small-wink.gif" border="0">. He has been doing so good this summer...He usually has a cough all the time (well 3-5 times a day kinda fits) Since its been hot outside that has went away. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We have a cf clinic appt on Tuesday and will get cultured again so I pray that this one will come back clear too.

I would definitely get a different nebulizer if its taking over 25 mins...the first time we were on cipro for a different infection it was taking 45-50 mins to neb...we were miserable and so was he...this time around we got a new cup and a new machine, made all the difference! It took about 20 mins...much more better for his little impatient butt! <img src="i/expressions/face-icon-small-wink.gif" border="0">

To Pete: I hope you guys are doing ok with this...I would definitely ask about doing tobi and cipro together to get rid of it. Our doctors told us the first time they culture it they can usually get it gone with using both meds. They said they usually dont culture it again for awhile after that....we will see about that one though. Good luck!
 
M

mom2cameron

New member
Sorry I have been away...we just got Camerons new culture results back Wednesday...no pseudo! I still feel like its not true for some strange reason though. (I keep thinking maybe he didn't give a good enough culture sample) Hope its not hiding way down in there. He didn't have any symptoms with it at all which I think made it a bit more bearable on my mental state <img src="i/expressions/face-icon-small-wink.gif" border="0">. He has been doing so good this summer...He usually has a cough all the time (well 3-5 times a day kinda fits) Since its been hot outside that has went away. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We have a cf clinic appt on Tuesday and will get cultured again so I pray that this one will come back clear too.
<br />
<br />I would definitely get a different nebulizer if its taking over 25 mins...the first time we were on cipro for a different infection it was taking 45-50 mins to neb...we were miserable and so was he...this time around we got a new cup and a new machine, made all the difference! It took about 20 mins...much more better for his little impatient butt! <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />To Pete: I hope you guys are doing ok with this...I would definitely ask about doing tobi and cipro together to get rid of it. Our doctors told us the first time they culture it they can usually get it gone with using both meds. They said they usually dont culture it again for awhile after that....we will see about that one though. Good luck!
 
T

thinker

New member
Well these post are somewhat comforting however I am going to dare to ask a question I hope nobody will get mad about. My child got Pseudomonas and ended getting a picc line put in for it and it has now come back after being gone for 3 months. He is 2. Is this normal or could I have done something that has caused this to return? Like not cleaned my house good enough or something like that? His sheets are washed about every 2-3 days.

Please be honest because I want to make sure I am not doing something that could help prevent this but I am afraid to ask my doc.

What about the nebulizer? I was told to sterilize them every 3 days but I talked to someone who told me to clean them everyday.

Anything at all that I could've have done different to prevent this?
 
T

thinker

New member
Well these post are somewhat comforting however I am going to dare to ask a question I hope nobody will get mad about. My child got Pseudomonas and ended getting a picc line put in for it and it has now come back after being gone for 3 months. He is 2. Is this normal or could I have done something that has caused this to return? Like not cleaned my house good enough or something like that? His sheets are washed about every 2-3 days.

Please be honest because I want to make sure I am not doing something that could help prevent this but I am afraid to ask my doc.

What about the nebulizer? I was told to sterilize them every 3 days but I talked to someone who told me to clean them everyday.

Anything at all that I could've have done different to prevent this?
 
T

thinker

New member
Well these post are somewhat comforting however I am going to dare to ask a question I hope nobody will get mad about. My child got Pseudomonas and ended getting a picc line put in for it and it has now come back after being gone for 3 months. He is 2. Is this normal or could I have done something that has caused this to return? Like not cleaned my house good enough or something like that? His sheets are washed about every 2-3 days.
<br />
<br />Please be honest because I want to make sure I am not doing something that could help prevent this but I am afraid to ask my doc.
<br />
<br />What about the nebulizer? I was told to sterilize them every 3 days but I talked to someone who told me to clean them everyday.
<br />
<br />Anything at all that I could've have done different to prevent this?
<br />
<br />
 
K

krisgabes

New member
I'm really glad that this was posted. I've been dx since 4 months old, but we've never asked about specific mutations, etc, and types of bugs. I've been told that I culture PA, e. coli, and staph. What is the difference between all of them. I most related to the posts in this thread about being mostly digestive and then all of a sudden respiratory issues. Can anyone shed some light on the types and characteristics of specific bugs?
 
K

krisgabes

New member
I'm really glad that this was posted. I've been dx since 4 months old, but we've never asked about specific mutations, etc, and types of bugs. I've been told that I culture PA, e. coli, and staph. What is the difference between all of them. I most related to the posts in this thread about being mostly digestive and then all of a sudden respiratory issues. Can anyone shed some light on the types and characteristics of specific bugs?
 
K

krisgabes

New member
I'm really glad that this was posted. I've been dx since 4 months old, but we've never asked about specific mutations, etc, and types of bugs. I've been told that I culture PA, e. coli, and staph. What is the difference between all of them. I most related to the posts in this thread about being mostly digestive and then all of a sudden respiratory issues. Can anyone shed some light on the types and characteristics of specific bugs?
 
W

windex125

Guest
I am not sure this will be of any help but cultured PA abt 2 yrs ago prior to that it was e coli/staph and my biggest most trouble maker has been MAC bacteria my CF has been more respiratroy issues. I have only one functioing lung right now due to the MAC diseasing the right side.It does not even show up on the xray anymore. But I am also a women of 55 I always had smaller digestive issues, now that has changed as well. Since we have what I always say a compromised immune system, we get these bugs, normal people are able to clear their lungs with a normal dose of meds and its gone, but with us our thick mucus causes these bacteria's to fine a nice spot and just grow and grow.I also have a port in my right shoulder which was put in 9yrs ago, I was so upset but it's worked out for the best and has kept me well doing my IV meds at home when needed. I will say I knew something was very different with the MAC as it had a taste, a nasty taste. It has made it's home in my body for many yrs. now and has become very drug restitant. I think the most important part now that you are a young adult is listen to yr. body if you are having pain you know somthing feels different, ck it out ask questions don't miss yr. doctor appts. but as well don't go into overkill. I never really researched alot of these issues, maybe I didn't want to know? I've lived mentally thinking the CF never controlled me, hope that does not sound crazy. I joined this site a few yrs. back and only read. Then I had to stop as I was getting very caught up in what I was reading? I just started to post as of last month, and alot has been very helpful. But remember we all have different issues with this disease, and aliments. Take Care, Be Well
 
W

windex125

Guest
I am not sure this will be of any help but cultured PA abt 2 yrs ago prior to that it was e coli/staph and my biggest most trouble maker has been MAC bacteria my CF has been more respiratroy issues. I have only one functioing lung right now due to the MAC diseasing the right side.It does not even show up on the xray anymore. But I am also a women of 55 I always had smaller digestive issues, now that has changed as well. Since we have what I always say a compromised immune system, we get these bugs, normal people are able to clear their lungs with a normal dose of meds and its gone, but with us our thick mucus causes these bacteria's to fine a nice spot and just grow and grow.I also have a port in my right shoulder which was put in 9yrs ago, I was so upset but it's worked out for the best and has kept me well doing my IV meds at home when needed. I will say I knew something was very different with the MAC as it had a taste, a nasty taste. It has made it's home in my body for many yrs. now and has become very drug restitant. I think the most important part now that you are a young adult is listen to yr. body if you are having pain you know somthing feels different, ck it out ask questions don't miss yr. doctor appts. but as well don't go into overkill. I never really researched alot of these issues, maybe I didn't want to know? I've lived mentally thinking the CF never controlled me, hope that does not sound crazy. I joined this site a few yrs. back and only read. Then I had to stop as I was getting very caught up in what I was reading? I just started to post as of last month, and alot has been very helpful. But remember we all have different issues with this disease, and aliments. Take Care, Be Well
 
W

windex125

Guest
I am not sure this will be of any help but cultured PA abt 2 yrs ago prior to that it was e coli/staph and my biggest most trouble maker has been MAC bacteria my CF has been more respiratroy issues. I have only one functioing lung right now due to the MAC diseasing the right side.It does not even show up on the xray anymore. But I am also a women of 55 I always had smaller digestive issues, now that has changed as well. Since we have what I always say a compromised immune system, we get these bugs, normal people are able to clear their lungs with a normal dose of meds and its gone, but with us our thick mucus causes these bacteria's to fine a nice spot and just grow and grow.I also have a port in my right shoulder which was put in 9yrs ago, I was so upset but it's worked out for the best and has kept me well doing my IV meds at home when needed. I will say I knew something was very different with the MAC as it had a taste, a nasty taste. It has made it's home in my body for many yrs. now and has become very drug restitant. I think the most important part now that you are a young adult is listen to yr. body if you are having pain you know somthing feels different, ck it out ask questions don't miss yr. doctor appts. but as well don't go into overkill. I never really researched alot of these issues, maybe I didn't want to know? I've lived mentally thinking the CF never controlled me, hope that does not sound crazy. I joined this site a few yrs. back and only read. Then I had to stop as I was getting very caught up in what I was reading? I just started to post as of last month, and alot has been very helpful. But remember we all have different issues with this disease, and aliments. Take Care, Be Well
 
You must log in or register to reply here.
Top