My girls clinic appt

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tammykrumrey

Guest
I normally never ask a lot of questions, but it seems that for some reason I am having plenty today...

My girls had CF appt last week which went very well. Kayla's PFTs were 100% (down from 104% three months ago) and she gained three pounds<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hannah's PFT's were 89% (down from 92% three months ago) and she gained nothing, but still at about 40% for her age. So, we were happy (well I was, but Hannah was disappointed that her's were down a bit because she said she tried VERY hard to do good).

Now this is my question...we got their culture results, and Kayla cultured Staph and Group A Strep. Hannah cultured nothing. I am happy to hear this, because they have had MRSA, Aspergillus, and PA in the past (both didn't have all, between them this is what they would culture). How confident are you in your child's throat cultures being accurate? They weren't coughing up anything so it wasn't a real good sputum test, but is a throat culture just as accurate? I am always worried about what might be hiding deep down in those lungs that we aren't seeing.

I try not to be overly worried, they really are doing great! I just want to keep it that way that's all.
 
T

tammykrumrey

Guest
I normally never ask a lot of questions, but it seems that for some reason I am having plenty today...

My girls had CF appt last week which went very well. Kayla's PFTs were 100% (down from 104% three months ago) and she gained three pounds<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hannah's PFT's were 89% (down from 92% three months ago) and she gained nothing, but still at about 40% for her age. So, we were happy (well I was, but Hannah was disappointed that her's were down a bit because she said she tried VERY hard to do good).

Now this is my question...we got their culture results, and Kayla cultured Staph and Group A Strep. Hannah cultured nothing. I am happy to hear this, because they have had MRSA, Aspergillus, and PA in the past (both didn't have all, between them this is what they would culture). How confident are you in your child's throat cultures being accurate? They weren't coughing up anything so it wasn't a real good sputum test, but is a throat culture just as accurate? I am always worried about what might be hiding deep down in those lungs that we aren't seeing.

I try not to be overly worried, they really are doing great! I just want to keep it that way that's all.
 
T

tammykrumrey

Guest
I normally never ask a lot of questions, but it seems that for some reason I am having plenty today...

My girls had CF appt last week which went very well. Kayla's PFTs were 100% (down from 104% three months ago) and she gained three pounds<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hannah's PFT's were 89% (down from 92% three months ago) and she gained nothing, but still at about 40% for her age. So, we were happy (well I was, but Hannah was disappointed that her's were down a bit because she said she tried VERY hard to do good).

Now this is my question...we got their culture results, and Kayla cultured Staph and Group A Strep. Hannah cultured nothing. I am happy to hear this, because they have had MRSA, Aspergillus, and PA in the past (both didn't have all, between them this is what they would culture). How confident are you in your child's throat cultures being accurate? They weren't coughing up anything so it wasn't a real good sputum test, but is a throat culture just as accurate? I am always worried about what might be hiding deep down in those lungs that we aren't seeing.

I try not to be overly worried, they really are doing great! I just want to keep it that way that's all.
 
R

Rebjane

Super Moderator
That's great your girls had a good clinic visit , yeah! The throat cultures do not always reflect what is growing in your lungs. We went through this at my daughter's last clinic visit. She was throat cultured and she grew some staph areus that was sens to penicillen. She usually grows MRSA but it did not show up on her throat culture which I was very happy about. maggie was coughing at the time and we ended up treating her with an anti for the new staph which worked. I could even tell that her cough didn't sound like her MRSA cough but like something different. So, I was happy the MRSA wasn't there i know somewhere it is hiding and that hoepfully with good airway clearance and keeping Maggie healthy, we'll be able to keep this MRSA dormant for as long as possible. The most accurate culture would be to do a bronch to find out what is growing in the lungs, which is invasive.
 
R

Rebjane

Super Moderator
That's great your girls had a good clinic visit , yeah! The throat cultures do not always reflect what is growing in your lungs. We went through this at my daughter's last clinic visit. She was throat cultured and she grew some staph areus that was sens to penicillen. She usually grows MRSA but it did not show up on her throat culture which I was very happy about. maggie was coughing at the time and we ended up treating her with an anti for the new staph which worked. I could even tell that her cough didn't sound like her MRSA cough but like something different. So, I was happy the MRSA wasn't there i know somewhere it is hiding and that hoepfully with good airway clearance and keeping Maggie healthy, we'll be able to keep this MRSA dormant for as long as possible. The most accurate culture would be to do a bronch to find out what is growing in the lungs, which is invasive.
 
R

Rebjane

Super Moderator
That's great your girls had a good clinic visit , yeah! The throat cultures do not always reflect what is growing in your lungs. We went through this at my daughter's last clinic visit. She was throat cultured and she grew some staph areus that was sens to penicillen. She usually grows MRSA but it did not show up on her throat culture which I was very happy about. maggie was coughing at the time and we ended up treating her with an anti for the new staph which worked. I could even tell that her cough didn't sound like her MRSA cough but like something different. So, I was happy the MRSA wasn't there i know somewhere it is hiding and that hoepfully with good airway clearance and keeping Maggie healthy, we'll be able to keep this MRSA dormant for as long as possible. The most accurate culture would be to do a bronch to find out what is growing in the lungs, which is invasive.
 
T

tammykrumrey

Guest
That was my feelings also about the throat culture not being really a great indication as to what is going on in the lungs. I absolutely agree that I would not want to do a bronch just to see what is going on unless they were having some problems, which they obviously aren't.

I don't feel that 89% PFT's is GREAT for a 7 year old, but I think that maybe it's her age and not doing a good job at PFTs yet. She can blow out longer than she used to, but now the number is lower than it was a year ago when she was only blowing out for like 3 seconds. I hope that maybe in the next few visits she will be able to bring those numbers up<img src="i/expressions/face-icon-small-smile.gif" border="0"> Practice makes perfect.
 
T

tammykrumrey

Guest
That was my feelings also about the throat culture not being really a great indication as to what is going on in the lungs. I absolutely agree that I would not want to do a bronch just to see what is going on unless they were having some problems, which they obviously aren't.

I don't feel that 89% PFT's is GREAT for a 7 year old, but I think that maybe it's her age and not doing a good job at PFTs yet. She can blow out longer than she used to, but now the number is lower than it was a year ago when she was only blowing out for like 3 seconds. I hope that maybe in the next few visits she will be able to bring those numbers up<img src="i/expressions/face-icon-small-smile.gif" border="0"> Practice makes perfect.
 
T

tammykrumrey

Guest
That was my feelings also about the throat culture not being really a great indication as to what is going on in the lungs. I absolutely agree that I would not want to do a bronch just to see what is going on unless they were having some problems, which they obviously aren't.

I don't feel that 89% PFT's is GREAT for a 7 year old, but I think that maybe it's her age and not doing a good job at PFTs yet. She can blow out longer than she used to, but now the number is lower than it was a year ago when she was only blowing out for like 3 seconds. I hope that maybe in the next few visits she will be able to bring those numbers up<img src="i/expressions/face-icon-small-smile.gif" border="0"> Practice makes perfect.
 
F

folione

New member
I've been leaning toward not putting much meaning into culture results lately. For one thing, the bugs I'm worried about are ones that the Dr. says are quite literally everywhere: on us, in us, in the ground, in the tap water, etc. so who is to say whether that swab caught something that never made it into the lungs in the first place. For another thing, my son (the one with CF) has cultured pseudomonas half a dozen times in the past 3 years but then had not a speck of it show up in follow-up samples taken via bronchoscopies and is doing fine. I think all these tests are more like clues or suggestions about what's going on inside rather than definitive answers and it takes the whole picture and long-term relationships between Dr. and patient to make a good judgement about what it all means.
 
F

folione

New member
I've been leaning toward not putting much meaning into culture results lately. For one thing, the bugs I'm worried about are ones that the Dr. says are quite literally everywhere: on us, in us, in the ground, in the tap water, etc. so who is to say whether that swab caught something that never made it into the lungs in the first place. For another thing, my son (the one with CF) has cultured pseudomonas half a dozen times in the past 3 years but then had not a speck of it show up in follow-up samples taken via bronchoscopies and is doing fine. I think all these tests are more like clues or suggestions about what's going on inside rather than definitive answers and it takes the whole picture and long-term relationships between Dr. and patient to make a good judgement about what it all means.
 
F

folione

New member
I've been leaning toward not putting much meaning into culture results lately. For one thing, the bugs I'm worried about are ones that the Dr. says are quite literally everywhere: on us, in us, in the ground, in the tap water, etc. so who is to say whether that swab caught something that never made it into the lungs in the first place. For another thing, my son (the one with CF) has cultured pseudomonas half a dozen times in the past 3 years but then had not a speck of it show up in follow-up samples taken via bronchoscopies and is doing fine. I think all these tests are more like clues or suggestions about what's going on inside rather than definitive answers and it takes the whole picture and long-term relationships between Dr. and patient to make a good judgement about what it all means.
 
N

NoExcuses

New member
Throat cultures are not accurate.

Whatever area of the lungs the child happens to be coughing up sputum from, that is what will show up in the culture.

So if PA in in the lower right lobe, and the cough on culture day is producing sputum from the upper left lobe.... guess what? PA won't shot up on the culture.

Basically bugs don't go away once you are colonized... so you can bet everything is still around
 
N

NoExcuses

New member
Throat cultures are not accurate.

Whatever area of the lungs the child happens to be coughing up sputum from, that is what will show up in the culture.

So if PA in in the lower right lobe, and the cough on culture day is producing sputum from the upper left lobe.... guess what? PA won't shot up on the culture.

Basically bugs don't go away once you are colonized... so you can bet everything is still around
 
N

NoExcuses

New member
Throat cultures are not accurate.

Whatever area of the lungs the child happens to be coughing up sputum from, that is what will show up in the culture.

So if PA in in the lower right lobe, and the cough on culture day is producing sputum from the upper left lobe.... guess what? PA won't shot up on the culture.

Basically bugs don't go away once you are colonized... so you can bet everything is still around
 
M

mneville

Guest
I asked Warwick about the accuracy of throat cultures ect..He said that a doctor's job is to make assumptions. He does not routinely do bronchoscopies but uses the cultures along with his assumptions about what the patient is experiencing. There really is not that much more to go on..So although I know Aidans cultures are not always accurate, that is what doctors have to use and assume things on.So I have learned to trust them to some extent and watch Aidan closely.
COngrats on the great report!
Great Strides- our walk is this Sunday. WE are over $10,000 already!
Megan
 
M

mneville

Guest
I asked Warwick about the accuracy of throat cultures ect..He said that a doctor's job is to make assumptions. He does not routinely do bronchoscopies but uses the cultures along with his assumptions about what the patient is experiencing. There really is not that much more to go on..So although I know Aidans cultures are not always accurate, that is what doctors have to use and assume things on.So I have learned to trust them to some extent and watch Aidan closely.
COngrats on the great report!
Great Strides- our walk is this Sunday. WE are over $10,000 already!
Megan
 
M

mneville

Guest
I asked Warwick about the accuracy of throat cultures ect..He said that a doctor's job is to make assumptions. He does not routinely do bronchoscopies but uses the cultures along with his assumptions about what the patient is experiencing. There really is not that much more to go on..So although I know Aidans cultures are not always accurate, that is what doctors have to use and assume things on.So I have learned to trust them to some extent and watch Aidan closely.
COngrats on the great report!
Great Strides- our walk is this Sunday. WE are over $10,000 already!
Megan
 
T

tammykrumrey

Guest
Thanks for all the responses. I was pretty sure that the results could not be a 100% true indication of what was going on, I just needed some others thoughts on it.
 
T

tammykrumrey

Guest
Thanks for all the responses. I was pretty sure that the results could not be a 100% true indication of what was going on, I just needed some others thoughts on it.
 
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