Unidentified Bacteria

pjspiegle · Jun 13, 2007

HI, My son is 13 years old with CF. Overall he is doing really well or at least that is what his doctor is trying to convince us of. He has been doing a lot of tune-ups the last 2 years with little to no improvements or if he does improve, as soon as we stop the IV's, he goes right back to where we started from. His baseline was 112% and now is running 78% to 86%. He isn't growing anything new or different in his cultures. He does have staph, prevotella, strep, and aspergillus but has had those for over a year now and those don't always grow with some of his cultures. The doctor does not seem at all concern but I think they are missing something. It gets really frustrating when we go to clinic because its like taking a car to the mechanic and it does not do anything you tell them but as soon as you leave it starts again. His cough is way up, energy down, ocassional fevers, and so on. There is some talk that the antibotics are just covering up whatever is really going on but not clearing it up. I thought for sure when we were in clinic yesterday and his PFT's were back to 79% they were going to admit him, but they want to give him another month. We are both getting really tired of all this and just want some answers, realizing there may not be any answers. Any suggestions?

Patty, CF mom, mother of 4 only 1 with CF

pjspiegle · Jun 13, 2007

HI, My son is 13 years old with CF. Overall he is doing really well or at least that is what his doctor is trying to convince us of. He has been doing a lot of tune-ups the last 2 years with little to no improvements or if he does improve, as soon as we stop the IV's, he goes right back to where we started from. His baseline was 112% and now is running 78% to 86%. He isn't growing anything new or different in his cultures. He does have staph, prevotella, strep, and aspergillus but has had those for over a year now and those don't always grow with some of his cultures. The doctor does not seem at all concern but I think they are missing something. It gets really frustrating when we go to clinic because its like taking a car to the mechanic and it does not do anything you tell them but as soon as you leave it starts again. His cough is way up, energy down, ocassional fevers, and so on. There is some talk that the antibotics are just covering up whatever is really going on but not clearing it up. I thought for sure when we were in clinic yesterday and his PFT's were back to 79% they were going to admit him, but they want to give him another month. We are both getting really tired of all this and just want some answers, realizing there may not be any answers. Any suggestions?

Patty, CF mom, mother of 4 only 1 with CF

pjspiegle · Jun 13, 2007

HI, My son is 13 years old with CF. Overall he is doing really well or at least that is what his doctor is trying to convince us of. He has been doing a lot of tune-ups the last 2 years with little to no improvements or if he does improve, as soon as we stop the IV's, he goes right back to where we started from. His baseline was 112% and now is running 78% to 86%. He isn't growing anything new or different in his cultures. He does have staph, prevotella, strep, and aspergillus but has had those for over a year now and those don't always grow with some of his cultures. The doctor does not seem at all concern but I think they are missing something. It gets really frustrating when we go to clinic because its like taking a car to the mechanic and it does not do anything you tell them but as soon as you leave it starts again. His cough is way up, energy down, ocassional fevers, and so on. There is some talk that the antibotics are just covering up whatever is really going on but not clearing it up. I thought for sure when we were in clinic yesterday and his PFT's were back to 79% they were going to admit him, but they want to give him another month. We are both getting really tired of all this and just want some answers, realizing there may not be any answers. Any suggestions?

Patty, CF mom, mother of 4 only 1 with CF

pjspiegle · Jun 13, 2007

HI, My son is 13 years old with CF. Overall he is doing really well or at least that is what his doctor is trying to convince us of. He has been doing a lot of tune-ups the last 2 years with little to no improvements or if he does improve, as soon as we stop the IV's, he goes right back to where we started from. His baseline was 112% and now is running 78% to 86%. He isn't growing anything new or different in his cultures. He does have staph, prevotella, strep, and aspergillus but has had those for over a year now and those don't always grow with some of his cultures. The doctor does not seem at all concern but I think they are missing something. It gets really frustrating when we go to clinic because its like taking a car to the mechanic and it does not do anything you tell them but as soon as you leave it starts again. His cough is way up, energy down, ocassional fevers, and so on. There is some talk that the antibotics are just covering up whatever is really going on but not clearing it up. I thought for sure when we were in clinic yesterday and his PFT's were back to 79% they were going to admit him, but they want to give him another month. We are both getting really tired of all this and just want some answers, realizing there may not be any answers. Any suggestions?

Patty, CF mom, mother of 4 only 1 with CF

pjspiegle · Jun 13, 2007

HI, My son is 13 years old with CF. Overall he is doing really well or at least that is what his doctor is trying to convince us of. He has been doing a lot of tune-ups the last 2 years with little to no improvements or if he does improve, as soon as we stop the IV's, he goes right back to where we started from. His baseline was 112% and now is running 78% to 86%. He isn't growing anything new or different in his cultures. He does have staph, prevotella, strep, and aspergillus but has had those for over a year now and those don't always grow with some of his cultures. The doctor does not seem at all concern but I think they are missing something. It gets really frustrating when we go to clinic because its like taking a car to the mechanic and it does not do anything you tell them but as soon as you leave it starts again. His cough is way up, energy down, ocassional fevers, and so on. There is some talk that the antibotics are just covering up whatever is really going on but not clearing it up. I thought for sure when we were in clinic yesterday and his PFT's were back to 79% they were going to admit him, but they want to give him another month. We are both getting really tired of all this and just want some answers, realizing there may not be any answers. Any suggestions?

Patty, CF mom, mother of 4 only 1 with CF

pjspiegle · Jun 13, 2007

HI, My son is 13 years old with CF. Overall he is doing really well or at least that is what his doctor is trying to convince us of. He has been doing a lot of tune-ups the last 2 years with little to no improvements or if he does improve, as soon as we stop the IV's, he goes right back to where we started from. His baseline was 112% and now is running 78% to 86%. He isn't growing anything new or different in his cultures. He does have staph, prevotella, strep, and aspergillus but has had those for over a year now and those don't always grow with some of his cultures. The doctor does not seem at all concern but I think they are missing something. It gets really frustrating when we go to clinic because its like taking a car to the mechanic and it does not do anything you tell them but as soon as you leave it starts again. His cough is way up, energy down, ocassional fevers, and so on. There is some talk that the antibotics are just covering up whatever is really going on but not clearing it up. I thought for sure when we were in clinic yesterday and his PFT's were back to 79% they were going to admit him, but they want to give him another month. We are both getting really tired of all this and just want some answers, realizing there may not be any answers. Any suggestions?

Patty, CF mom, mother of 4 only 1 with CF

ktsmom · Jun 13, 2007

Hi Patty - my response will be very similar to the one I posted to cherishthree's question. It has to do with how you feel about the level of care you are getting from your current clinic. Clearly you are questioning things. After lots of reading and research, I think the quality of care our daughter receives is outstanding. Of course it is easy for me to say that right now as things are going pretty smoothly regarding her health.

It is exhausting, to say the least, to do research on my own as to standards of CF care. Not only do I not have a bio-chemistry background, I have my hands full with work, treatments, and the regular mommy/wife stuff <img src="i/expressions/face-icon-small-smile.gif" border="0">. But I have found INCREDIBLE differences across the country, as I'm sure you are aware. And lots of opinions from people on here. Soooo much information and so little time!!!

Do what you can to be an advocate for your child. Trust your instincts. For what its worth, their "wait and see" attitude would frustrate me at this point as well. Hugs and strength to you!

ktsmom · Jun 13, 2007

Hi Patty - my response will be very similar to the one I posted to cherishthree's question. It has to do with how you feel about the level of care you are getting from your current clinic. Clearly you are questioning things. After lots of reading and research, I think the quality of care our daughter receives is outstanding. Of course it is easy for me to say that right now as things are going pretty smoothly regarding her health.

It is exhausting, to say the least, to do research on my own as to standards of CF care. Not only do I not have a bio-chemistry background, I have my hands full with work, treatments, and the regular mommy/wife stuff <img src="i/expressions/face-icon-small-smile.gif" border="0">. But I have found INCREDIBLE differences across the country, as I'm sure you are aware. And lots of opinions from people on here. Soooo much information and so little time!!!

Do what you can to be an advocate for your child. Trust your instincts. For what its worth, their "wait and see" attitude would frustrate me at this point as well. Hugs and strength to you!

ktsmom · Jun 13, 2007

Hi Patty - my response will be very similar to the one I posted to cherishthree's question. It has to do with how you feel about the level of care you are getting from your current clinic. Clearly you are questioning things. After lots of reading and research, I think the quality of care our daughter receives is outstanding. Of course it is easy for me to say that right now as things are going pretty smoothly regarding her health.

It is exhausting, to say the least, to do research on my own as to standards of CF care. Not only do I not have a bio-chemistry background, I have my hands full with work, treatments, and the regular mommy/wife stuff <img src="i/expressions/face-icon-small-smile.gif" border="0">. But I have found INCREDIBLE differences across the country, as I'm sure you are aware. And lots of opinions from people on here. Soooo much information and so little time!!!

Do what you can to be an advocate for your child. Trust your instincts. For what its worth, their "wait and see" attitude would frustrate me at this point as well. Hugs and strength to you!

ktsmom · Jun 13, 2007

Hi Patty - my response will be very similar to the one I posted to cherishthree's question. It has to do with how you feel about the level of care you are getting from your current clinic. Clearly you are questioning things. After lots of reading and research, I think the quality of care our daughter receives is outstanding. Of course it is easy for me to say that right now as things are going pretty smoothly regarding her health.

It is exhausting, to say the least, to do research on my own as to standards of CF care. Not only do I not have a bio-chemistry background, I have my hands full with work, treatments, and the regular mommy/wife stuff <img src="i/expressions/face-icon-small-smile.gif" border="0">. But I have found INCREDIBLE differences across the country, as I'm sure you are aware. And lots of opinions from people on here. Soooo much information and so little time!!!

Do what you can to be an advocate for your child. Trust your instincts. For what its worth, their "wait and see" attitude would frustrate me at this point as well. Hugs and strength to you!

ktsmom · Jun 13, 2007

Hi Patty - my response will be very similar to the one I posted to cherishthree's question. It has to do with how you feel about the level of care you are getting from your current clinic. Clearly you are questioning things. After lots of reading and research, I think the quality of care our daughter receives is outstanding. Of course it is easy for me to say that right now as things are going pretty smoothly regarding her health.

It is exhausting, to say the least, to do research on my own as to standards of CF care. Not only do I not have a bio-chemistry background, I have my hands full with work, treatments, and the regular mommy/wife stuff <img src="i/expressions/face-icon-small-smile.gif" border="0">. But I have found INCREDIBLE differences across the country, as I'm sure you are aware. And lots of opinions from people on here. Soooo much information and so little time!!!

Do what you can to be an advocate for your child. Trust your instincts. For what its worth, their "wait and see" attitude would frustrate me at this point as well. Hugs and strength to you!

ktsmom · Jun 13, 2007

Hi Patty - my response will be very similar to the one I posted to cherishthree's question. It has to do with how you feel about the level of care you are getting from your current clinic. Clearly you are questioning things. After lots of reading and research, I think the quality of care our daughter receives is outstanding. Of course it is easy for me to say that right now as things are going pretty smoothly regarding her health.

It is exhausting, to say the least, to do research on my own as to standards of CF care. Not only do I not have a bio-chemistry background, I have my hands full with work, treatments, and the regular mommy/wife stuff <img src="i/expressions/face-icon-small-smile.gif" border="0">. But I have found INCREDIBLE differences across the country, as I'm sure you are aware. And lots of opinions from people on here. Soooo much information and so little time!!!

Do what you can to be an advocate for your child. Trust your instincts. For what its worth, their "wait and see" attitude would frustrate me at this point as well. Hugs and strength to you!

rcq925 · Jun 13, 2007