burkholderia cenocepacia

alyssabeth2002 · Nov 20, 2008

Hi, I have three children and two of them have CF. My daughter who is 10 cultured burkholderia cenocepacia last year they tried oral antibiotics with no luck and then she was hospitalized and put on IV antibiotics for 3 weeks. So far she has not recultured the bacteria. Does anyone have children or anyone they know with Cf that has cultured this bacteria that can tell me what to expect in terms of illness and treatment? Thanks

alyssabeth2002 · Nov 20, 2008

Hi, I have three children and two of them have CF. My daughter who is 10 cultured burkholderia cenocepacia last year they tried oral antibiotics with no luck and then she was hospitalized and put on IV antibiotics for 3 weeks. So far she has not recultured the bacteria. Does anyone have children or anyone they know with Cf that has cultured this bacteria that can tell me what to expect in terms of illness and treatment? Thanks

alyssabeth2002 · Nov 20, 2008

Hi, I have three children and two of them have CF. My daughter who is 10 cultured burkholderia cenocepacia last year they tried oral antibiotics with no luck and then she was hospitalized and put on IV antibiotics for 3 weeks. So far she has not recultured the bacteria. Does anyone have children or anyone they know with Cf that has cultured this bacteria that can tell me what to expect in terms of illness and treatment? Thanks

alyssabeth2002 · Nov 20, 2008

Hi, I have three children and two of them have CF. My daughter who is 10 cultured burkholderia cenocepacia last year they tried oral antibiotics with no luck and then she was hospitalized and put on IV antibiotics for 3 weeks. So far she has not recultured the bacteria. Does anyone have children or anyone they know with Cf that has cultured this bacteria that can tell me what to expect in terms of illness and treatment? Thanks

alyssabeth2002 · Nov 20, 2008

Hi, I have three children and two of them have CF. My daughter who is 10 cultured burkholderia cenocepacia last year they tried oral antibiotics with no luck and then she was hospitalized and put on IV antibiotics for 3 weeks. So far she has not recultured the bacteria. Does anyone have children or anyone they know with Cf that has cultured this bacteria that can tell me what to expect in terms of illness and treatment? Thanks

tammykrumrey · Nov 20, 2008

I would ask this on the adult section as well, b/c you may get a better response. B. Cepacia is just not that common to culture and many parents don't have a lot of experience with it.

My 10 year old daughter just started culturing Burkholderia Multivorans about three months ago, and I was really searching for help and found many answers on the adult secion. I also researched it extensively on the internet. Although the information I find can be frightening regarding cepacia, I just feel that the knowledge gives me an edge on what to ask from my daughters CF dr. and what to maybe expect.

That is great that her cultures have been clear though! It is my understanding that Cenocepacia can be more aggressive than the other types of Burkholderia Cepacia, but I think it is a good sign that you have been able to get the bacteria counts down where her cultures have been clear (or that possibly you eradicated it<img src="i/expressions/face-icon-small-smile.gif" border="0">)

I see that you have more than one with CF, as I do as well. I assume that your other child has not cultured it...that has been one of my fears...that my other daughter will catch it as well.

But again, try to ask this on the adult section. I am sure you will get more responses. You can also search the topic on this site b/c I know that cepacia has been discussed in the past.

Welcome to the site, and we look forward to hearing more from you!

tammykrumrey · Nov 20, 2008

I would ask this on the adult section as well, b/c you may get a better response. B. Cepacia is just not that common to culture and many parents don't have a lot of experience with it.

My 10 year old daughter just started culturing Burkholderia Multivorans about three months ago, and I was really searching for help and found many answers on the adult secion. I also researched it extensively on the internet. Although the information I find can be frightening regarding cepacia, I just feel that the knowledge gives me an edge on what to ask from my daughters CF dr. and what to maybe expect.

That is great that her cultures have been clear though! It is my understanding that Cenocepacia can be more aggressive than the other types of Burkholderia Cepacia, but I think it is a good sign that you have been able to get the bacteria counts down where her cultures have been clear (or that possibly you eradicated it<img src="i/expressions/face-icon-small-smile.gif" border="0">)

I see that you have more than one with CF, as I do as well. I assume that your other child has not cultured it...that has been one of my fears...that my other daughter will catch it as well.

But again, try to ask this on the adult section. I am sure you will get more responses. You can also search the topic on this site b/c I know that cepacia has been discussed in the past.

Welcome to the site, and we look forward to hearing more from you!

tammykrumrey · Nov 20, 2008

I would ask this on the adult section as well, b/c you may get a better response. B. Cepacia is just not that common to culture and many parents don't have a lot of experience with it.

My 10 year old daughter just started culturing Burkholderia Multivorans about three months ago, and I was really searching for help and found many answers on the adult secion. I also researched it extensively on the internet. Although the information I find can be frightening regarding cepacia, I just feel that the knowledge gives me an edge on what to ask from my daughters CF dr. and what to maybe expect.

That is great that her cultures have been clear though! It is my understanding that Cenocepacia can be more aggressive than the other types of Burkholderia Cepacia, but I think it is a good sign that you have been able to get the bacteria counts down where her cultures have been clear (or that possibly you eradicated it<img src="i/expressions/face-icon-small-smile.gif" border="0">)

I see that you have more than one with CF, as I do as well. I assume that your other child has not cultured it...that has been one of my fears...that my other daughter will catch it as well.

But again, try to ask this on the adult section. I am sure you will get more responses. You can also search the topic on this site b/c I know that cepacia has been discussed in the past.

Welcome to the site, and we look forward to hearing more from you!

tammykrumrey · Nov 20, 2008

I would ask this on the adult section as well, b/c you may get a better response. B. Cepacia is just not that common to culture and many parents don't have a lot of experience with it.

My 10 year old daughter just started culturing Burkholderia Multivorans about three months ago, and I was really searching for help and found many answers on the adult secion. I also researched it extensively on the internet. Although the information I find can be frightening regarding cepacia, I just feel that the knowledge gives me an edge on what to ask from my daughters CF dr. and what to maybe expect.

That is great that her cultures have been clear though! It is my understanding that Cenocepacia can be more aggressive than the other types of Burkholderia Cepacia, but I think it is a good sign that you have been able to get the bacteria counts down where her cultures have been clear (or that possibly you eradicated it<img src="i/expressions/face-icon-small-smile.gif" border="0">)

I see that you have more than one with CF, as I do as well. I assume that your other child has not cultured it...that has been one of my fears...that my other daughter will catch it as well.

But again, try to ask this on the adult section. I am sure you will get more responses. You can also search the topic on this site b/c I know that cepacia has been discussed in the past.

Welcome to the site, and we look forward to hearing more from you!

tammykrumrey · Nov 20, 2008

I would ask this on the adult section as well, b/c you may get a better response. B. Cepacia is just not that common to culture and many parents don't have a lot of experience with it.
 
 My 10 year old daughter just started culturing Burkholderia Multivorans about three months ago, and I was really searching for help and found many answers on the adult secion. I also researched it extensively on the internet. Although the information I find can be frightening regarding cepacia, I just feel that the knowledge gives me an edge on what to ask from my daughters CF dr. and what to maybe expect.
 
 That is great that her cultures have been clear though! It is my understanding that Cenocepacia can be more aggressive than the other types of Burkholderia Cepacia, but I think it is a good sign that you have been able to get the bacteria counts down where her cultures have been clear (or that possibly you eradicated it<img src="i/expressions/face-icon-small-smile.gif" border="0">)
 
 I see that you have more than one with CF, as I do as well. I assume that your other child has not cultured it...that has been one of my fears...that my other daughter will catch it as well.
 
 But again, try to ask this on the adult section. I am sure you will get more responses. You can also search the topic on this site b/c I know that cepacia has been discussed in the past.
 
 Welcome to the site, and we look forward to hearing more from you!

burkholderia cenocepacia

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