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False Positive Asymptomatic
- Thread starter larch07
- Start date
concernedmom
New member
Well, the thing that strikes me is that even if she has one copy of f508c (which sounds possible but not likely), she did have a <b>positive sweat test</b>. AND, she did have symptoms that while, yes, could be related to the CMV virus, also are easily explained by CF. If it were my child, I'd investigate the possibility that it could be f508c but I would assume they are both df08 and treat her accordingly. Just my 2 cents. <img src="i/expressions/face-icon-small-wink.gif" border="0">
concernedmom
New member
Well, the thing that strikes me is that even if she has one copy of f508c (which sounds possible but not likely), she did have a <b>positive sweat test</b>. AND, she did have symptoms that while, yes, could be related to the CMV virus, also are easily explained by CF. If it were my child, I'd investigate the possibility that it could be f508c but I would assume they are both df08 and treat her accordingly. Just my 2 cents. <img src="i/expressions/face-icon-small-wink.gif" border="0">
concernedmom
New member
Well, the thing that strikes me is that even if she has one copy of f508c (which sounds possible but not likely), she did have a <b>positive sweat test</b>. AND, she did have symptoms that while, yes, could be related to the CMV virus, also are easily explained by CF. If it were my child, I'd investigate the possibility that it could be f508c but I would assume they are both df08 and treat her accordingly. Just my 2 cents. <img src="i/expressions/face-icon-small-wink.gif" border="0">
concernedmom
New member
Well, the thing that strikes me is that even if she has one copy of f508c (which sounds possible but not likely), she did have a <b>positive sweat test</b>. AND, she did have symptoms that while, yes, could be related to the CMV virus, also are easily explained by CF. If it were my child, I'd investigate the possibility that it could be f508c but I would assume they are both df08 and treat her accordingly. Just my 2 cents. <img src="i/expressions/face-icon-small-wink.gif" border="0">
concernedmom
New member
Well, the thing that strikes me is that even if she has one copy of f508c (which sounds possible but not likely), she did have a <b>positive sweat test</b>. AND, she did have symptoms that while, yes, could be related to the CMV virus, also are easily explained by CF. If it were my child, I'd investigate the possibility that it could be f508c but I would assume they are both df08 and treat her accordingly. Just my 2 cents. <img src="i/expressions/face-icon-small-wink.gif" border="0">
concernedmom
New member
Well, the thing that strikes me is that even if she has one copy of f508c (which sounds possible but not likely), she did have a <b>positive sweat test</b>. AND, she did have symptoms that while, yes, could be related to the CMV virus, also are easily explained by CF. If it were my child, I'd investigate the possibility that it could be f508c but I would assume they are both df08 and treat her accordingly. Just my 2 cents. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Thank you for all your replys. I thought I would just clear a few things up.
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
Thank you for all your replys. I thought I would just clear a few things up.
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
Thank you for all your replys. I thought I would just clear a few things up.
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
Thank you for all your replys. I thought I would just clear a few things up.
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
Thank you for all your replys. I thought I would just clear a few things up.
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
Thank you for all your replys. I thought I would just clear a few things up.
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
Firstly the test they used for the DNA was a gel based one, which I guess rules out the chance of F508c.
The sweat test was performed when she was systamatically unwell with many of the symptoms known to cause false positive and our ped was very suprised at the results and had initally only tested to rule it out, especially as both me and my husband have huge families, dozens of kids everywhere.
After the diagnosis we were quite prepared to accept this had happened and still our. And until we know for sure we are doing everything we need to do because we do accept it is something she may have.
What we don't understand is that all her symptoms have disappeared, typically as though she had a virus. And when I say symptoms I say the few that could resemble CF.
She has never had any lung problems period. She has had one cold which cleared up within a week.
She has never had any salty skin, nor salty sweat, if she ever gets sweaty you can lick the beads of sweat and they are in no way salty.
She has had liver problems which have now righted them selves and if you analise the LFT results they are not consistant with what would be expected of a person with CF , they are consistant with a CMV infection.
She only had slow weight gain initally when she had anemia, I should also add that she was six weeks premature and the hospital discharged her without iron and a follow up appointment. Now her iron levels are normal her weight gain if fantastic well over double for her age.
She never had meconimum illius at birth.
Her stools have always been normal apart from two weeks of diarrhea whilst in hosptial. They have never ever smelt bad, not even close. They are not bulky, greasy, loose or frequent.
It seems to us that the diaganosis has poped up out of the blue while she was being treated for this virus. Because CF is such a serious thing the hospital has focused on this so much at the exclusion of all else (very bad practice in our book).
I think most people would doubt the diaganosis when it was made on symptoms that have now disappeared.
We have wondered if we are the luckiest people alive that she has had a virus that has had similar symptoms to Cf prompting the testing and infact we have just found it months or years earlier than we would of done whereby some lung damage etc may of occured. But you can't help also thinking how can you have something so life shortening without any symptoms....only time will tell I guess.
Could I also ask Okok, you said about the percent of CFTR protein, is there a test which shows how much is functioning?
They can do a nasal potential difference test to see how well the CFTR is functioning. Not all locations do this though and it probably wouldn't work out well in a young child so you would have to wait untill your child is older. They would probaly only even consider doing this test if it turned out your child had f508c instead of delf508. The delf508 causes a person to have NO functional CFTR protein whatsoever. This is because the protein is prevented from ever reaching the cell surface where it normally functions due to the fact it is slightly misfolded. In the case of delf508 the protein would actually work fine if it was able to reach the cell's surface.
So the first thing to find out is if it is even possible the lab could have made this mistake. If your testing was preformed by PAGE (polyacrylamide gel electrophoresis) ie the gel test...then you most likely contributed delta f508 (unless you have both delf508 and f508c which has happned before and only discovered due to carrier testing because the person's child had CF but that scenario it is extremely unlikely.) Find out how your husband's test was preformed. If his test was also preformed by PAGE then it is not very likely that your child has f508c instead of delf508 (unless you or your husband carries both mutations which is EXTREMELY unlikely.)
Have you spoken with your doctors about this??? If so what do they say???
It does seem unusual that your daughter's sweat has no salty taste to it. My son (no cf) sometimes even tastes extremely salty to me. Where are you tasting her?? her forehead...? As everyone has said, your daughter most likely has CF but has not yet developed pancreatic insuffiency (she's so young still and it is very common for it to develop over time) or has any lung problems. She should taste salty though at least once in a while. There is nothing wrong though with pushing your doctors to test her for the f508c mutation or to at least find out how testing was preformed.
So the first thing to find out is if it is even possible the lab could have made this mistake. If your testing was preformed by PAGE (polyacrylamide gel electrophoresis) ie the gel test...then you most likely contributed delta f508 (unless you have both delf508 and f508c which has happned before and only discovered due to carrier testing because the person's child had CF but that scenario it is extremely unlikely.) Find out how your husband's test was preformed. If his test was also preformed by PAGE then it is not very likely that your child has f508c instead of delf508 (unless you or your husband carries both mutations which is EXTREMELY unlikely.)
Have you spoken with your doctors about this??? If so what do they say???
It does seem unusual that your daughter's sweat has no salty taste to it. My son (no cf) sometimes even tastes extremely salty to me. Where are you tasting her?? her forehead...? As everyone has said, your daughter most likely has CF but has not yet developed pancreatic insuffiency (she's so young still and it is very common for it to develop over time) or has any lung problems. She should taste salty though at least once in a while. There is nothing wrong though with pushing your doctors to test her for the f508c mutation or to at least find out how testing was preformed.
They can do a nasal potential difference test to see how well the CFTR is functioning. Not all locations do this though and it probably wouldn't work out well in a young child so you would have to wait untill your child is older. They would probaly only even consider doing this test if it turned out your child had f508c instead of delf508. The delf508 causes a person to have NO functional CFTR protein whatsoever. This is because the protein is prevented from ever reaching the cell surface where it normally functions due to the fact it is slightly misfolded. In the case of delf508 the protein would actually work fine if it was able to reach the cell's surface.
So the first thing to find out is if it is even possible the lab could have made this mistake. If your testing was preformed by PAGE (polyacrylamide gel electrophoresis) ie the gel test...then you most likely contributed delta f508 (unless you have both delf508 and f508c which has happned before and only discovered due to carrier testing because the person's child had CF but that scenario it is extremely unlikely.) Find out how your husband's test was preformed. If his test was also preformed by PAGE then it is not very likely that your child has f508c instead of delf508 (unless you or your husband carries both mutations which is EXTREMELY unlikely.)
Have you spoken with your doctors about this??? If so what do they say???
It does seem unusual that your daughter's sweat has no salty taste to it. My son (no cf) sometimes even tastes extremely salty to me. Where are you tasting her?? her forehead...? As everyone has said, your daughter most likely has CF but has not yet developed pancreatic insuffiency (she's so young still and it is very common for it to develop over time) or has any lung problems. She should taste salty though at least once in a while. There is nothing wrong though with pushing your doctors to test her for the f508c mutation or to at least find out how testing was preformed.
So the first thing to find out is if it is even possible the lab could have made this mistake. If your testing was preformed by PAGE (polyacrylamide gel electrophoresis) ie the gel test...then you most likely contributed delta f508 (unless you have both delf508 and f508c which has happned before and only discovered due to carrier testing because the person's child had CF but that scenario it is extremely unlikely.) Find out how your husband's test was preformed. If his test was also preformed by PAGE then it is not very likely that your child has f508c instead of delf508 (unless you or your husband carries both mutations which is EXTREMELY unlikely.)
Have you spoken with your doctors about this??? If so what do they say???
It does seem unusual that your daughter's sweat has no salty taste to it. My son (no cf) sometimes even tastes extremely salty to me. Where are you tasting her?? her forehead...? As everyone has said, your daughter most likely has CF but has not yet developed pancreatic insuffiency (she's so young still and it is very common for it to develop over time) or has any lung problems. She should taste salty though at least once in a while. There is nothing wrong though with pushing your doctors to test her for the f508c mutation or to at least find out how testing was preformed.