False Positive Asymptomatic

[larch07]

hi
My daughter was diagnosised with cystic fibrosis six months ago because at the time she had slow weight gain (3-4oz a week) upset LFTs and anemia. They did various tests, amongst them a sweat test chloride 80 sodium 60 and a dna mutation test findind two delta f508 mutations. After these results, we also got some virus test results showing she had CMV. As they had possitive results for the CF they would not consider she had anything else wrong, case closed and comepetely ignored the CMV.
They told us what to expect, claimed she was pancreatic insuficent and began her on enzymes. We got our heads round it all hoping she was going to be OK.
After a few weeks all her symptoms went, iron supplements sorted out the anemia.
Her LFT were almost normal at diagnosis OF cf and went on within a few weeks to be comepletely normal.
It was when we began weaning her that the fun really began (at six months old). After several bad bouts of consipation we started reducing the amount of enzymes we were giving her, so much so that she is now on less than 5% of what she is suposed to need. She has all the food groups in her diet now including high fat yogert, cheese etc.
She has a normal appetite and is pilling on the weight putting more than double what she should for her age.
She doesnt have any problem with her stools going around three times a day. (She is eight months old). They don't smell bad, never have.
She has never had any chest problems, not even a little cough, nothing. We do her physio everyday and really feel we are waisting our time as there is nothing there to move.
We are aware that some people with CF can have very few symptoms but to have none?
Is it possible that she has a beign mutation?
The test kit they used to test her DNA doesn't test for F508C.
They have tested mine and my husbands DNA and that has come back with a F508delta each. If one of us has a F508C mutation would that still read a F508delta?
Does anyone else have no symptoms now after being diagnosised with CF symptoms/CF like symptoms.

Please help...as we are not getting any answers from the hospital , they seem to only see CF textbook.

 

[larch07]

hi
My daughter was diagnosised with cystic fibrosis six months ago because at the time she had slow weight gain (3-4oz a week) upset LFTs and anemia. They did various tests, amongst them a sweat test chloride 80 sodium 60 and a dna mutation test findind two delta f508 mutations. After these results, we also got some virus test results showing she had CMV. As they had possitive results for the CF they would not consider she had anything else wrong, case closed and comepetely ignored the CMV.
They told us what to expect, claimed she was pancreatic insuficent and began her on enzymes. We got our heads round it all hoping she was going to be OK.
After a few weeks all her symptoms went, iron supplements sorted out the anemia.
Her LFT were almost normal at diagnosis OF cf and went on within a few weeks to be comepletely normal.
It was when we began weaning her that the fun really began (at six months old). After several bad bouts of consipation we started reducing the amount of enzymes we were giving her, so much so that she is now on less than 5% of what she is suposed to need. She has all the food groups in her diet now including high fat yogert, cheese etc.
She has a normal appetite and is pilling on the weight putting more than double what she should for her age.
She doesnt have any problem with her stools going around three times a day. (She is eight months old). They don't smell bad, never have.
She has never had any chest problems, not even a little cough, nothing. We do her physio everyday and really feel we are waisting our time as there is nothing there to move.
We are aware that some people with CF can have very few symptoms but to have none?
Is it possible that she has a beign mutation?
The test kit they used to test her DNA doesn't test for F508C.
They have tested mine and my husbands DNA and that has come back with a F508delta each. If one of us has a F508C mutation would that still read a F508delta?
Does anyone else have no symptoms now after being diagnosised with CF symptoms/CF like symptoms.

Please help...as we are not getting any answers from the hospital , they seem to only see CF textbook.

 

[larch07]

hi
My daughter was diagnosised with cystic fibrosis six months ago because at the time she had slow weight gain (3-4oz a week) upset LFTs and anemia. They did various tests, amongst them a sweat test chloride 80 sodium 60 and a dna mutation test findind two delta f508 mutations. After these results, we also got some virus test results showing she had CMV. As they had possitive results for the CF they would not consider she had anything else wrong, case closed and comepetely ignored the CMV.
They told us what to expect, claimed she was pancreatic insuficent and began her on enzymes. We got our heads round it all hoping she was going to be OK.
After a few weeks all her symptoms went, iron supplements sorted out the anemia.
Her LFT were almost normal at diagnosis OF cf and went on within a few weeks to be comepletely normal.
It was when we began weaning her that the fun really began (at six months old). After several bad bouts of consipation we started reducing the amount of enzymes we were giving her, so much so that she is now on less than 5% of what she is suposed to need. She has all the food groups in her diet now including high fat yogert, cheese etc.
She has a normal appetite and is pilling on the weight putting more than double what she should for her age.
She doesnt have any problem with her stools going around three times a day. (She is eight months old). They don't smell bad, never have.
She has never had any chest problems, not even a little cough, nothing. We do her physio everyday and really feel we are waisting our time as there is nothing there to move.
We are aware that some people with CF can have very few symptoms but to have none?
Is it possible that she has a beign mutation?
The test kit they used to test her DNA doesn't test for F508C.
They have tested mine and my husbands DNA and that has come back with a F508delta each. If one of us has a F508C mutation would that still read a F508delta?
Does anyone else have no symptoms now after being diagnosised with CF symptoms/CF like symptoms.

Please help...as we are not getting any answers from the hospital , they seem to only see CF textbook.

 

[larch07]

hi
My daughter was diagnosised with cystic fibrosis six months ago because at the time she had slow weight gain (3-4oz a week) upset LFTs and anemia. They did various tests, amongst them a sweat test chloride 80 sodium 60 and a dna mutation test findind two delta f508 mutations. After these results, we also got some virus test results showing she had CMV. As they had possitive results for the CF they would not consider she had anything else wrong, case closed and comepetely ignored the CMV.
They told us what to expect, claimed she was pancreatic insuficent and began her on enzymes. We got our heads round it all hoping she was going to be OK.
After a few weeks all her symptoms went, iron supplements sorted out the anemia.
Her LFT were almost normal at diagnosis OF cf and went on within a few weeks to be comepletely normal.
It was when we began weaning her that the fun really began (at six months old). After several bad bouts of consipation we started reducing the amount of enzymes we were giving her, so much so that she is now on less than 5% of what she is suposed to need. She has all the food groups in her diet now including high fat yogert, cheese etc.
She has a normal appetite and is pilling on the weight putting more than double what she should for her age.
She doesnt have any problem with her stools going around three times a day. (She is eight months old). They don't smell bad, never have.
She has never had any chest problems, not even a little cough, nothing. We do her physio everyday and really feel we are waisting our time as there is nothing there to move.
We are aware that some people with CF can have very few symptoms but to have none?
Is it possible that she has a beign mutation?
The test kit they used to test her DNA doesn't test for F508C.
They have tested mine and my husbands DNA and that has come back with a F508delta each. If one of us has a F508C mutation would that still read a F508delta?
Does anyone else have no symptoms now after being diagnosised with CF symptoms/CF like symptoms.

Please help...as we are not getting any answers from the hospital , they seem to only see CF textbook.

 

[larch07]

hi
My daughter was diagnosised with cystic fibrosis six months ago because at the time she had slow weight gain (3-4oz a week) upset LFTs and anemia. They did various tests, amongst them a sweat test chloride 80 sodium 60 and a dna mutation test findind two delta f508 mutations. After these results, we also got some virus test results showing she had CMV. As they had possitive results for the CF they would not consider she had anything else wrong, case closed and comepetely ignored the CMV.
They told us what to expect, claimed she was pancreatic insuficent and began her on enzymes. We got our heads round it all hoping she was going to be OK.
After a few weeks all her symptoms went, iron supplements sorted out the anemia.
Her LFT were almost normal at diagnosis OF cf and went on within a few weeks to be comepletely normal.
It was when we began weaning her that the fun really began (at six months old). After several bad bouts of consipation we started reducing the amount of enzymes we were giving her, so much so that she is now on less than 5% of what she is suposed to need. She has all the food groups in her diet now including high fat yogert, cheese etc.
She has a normal appetite and is pilling on the weight putting more than double what she should for her age.
She doesnt have any problem with her stools going around three times a day. (She is eight months old). They don't smell bad, never have.
She has never had any chest problems, not even a little cough, nothing. We do her physio everyday and really feel we are waisting our time as there is nothing there to move.
We are aware that some people with CF can have very few symptoms but to have none?
Is it possible that she has a beign mutation?
The test kit they used to test her DNA doesn't test for F508C.
They have tested mine and my husbands DNA and that has come back with a F508delta each. If one of us has a F508C mutation would that still read a F508delta?
Does anyone else have no symptoms now after being diagnosised with CF symptoms/CF like symptoms.

Please help...as we are not getting any answers from the hospital , they seem to only see CF textbook.

 

[larch07]

hi
My daughter was diagnosised with cystic fibrosis six months ago because at the time she had slow weight gain (3-4oz a week) upset LFTs and anemia. They did various tests, amongst them a sweat test chloride 80 sodium 60 and a dna mutation test findind two delta f508 mutations. After these results, we also got some virus test results showing she had CMV. As they had possitive results for the CF they would not consider she had anything else wrong, case closed and comepetely ignored the CMV.
They told us what to expect, claimed she was pancreatic insuficent and began her on enzymes. We got our heads round it all hoping she was going to be OK.
After a few weeks all her symptoms went, iron supplements sorted out the anemia.
Her LFT were almost normal at diagnosis OF cf and went on within a few weeks to be comepletely normal.
It was when we began weaning her that the fun really began (at six months old). After several bad bouts of consipation we started reducing the amount of enzymes we were giving her, so much so that she is now on less than 5% of what she is suposed to need. She has all the food groups in her diet now including high fat yogert, cheese etc.
She has a normal appetite and is pilling on the weight putting more than double what she should for her age.
She doesnt have any problem with her stools going around three times a day. (She is eight months old). They don't smell bad, never have.
She has never had any chest problems, not even a little cough, nothing. We do her physio everyday and really feel we are waisting our time as there is nothing there to move.
We are aware that some people with CF can have very few symptoms but to have none?
Is it possible that she has a beign mutation?
The test kit they used to test her DNA doesn't test for F508C.
They have tested mine and my husbands DNA and that has come back with a F508delta each. If one of us has a F508C mutation would that still read a F508delta?
Does anyone else have no symptoms now after being diagnosised with CF symptoms/CF like symptoms.

Please help...as we are not getting any answers from the hospital , they seem to only see CF textbook.

 

[rcq925]

If your child has 2 Delta F508 genes, then she has CF. Everyone with CF is different. Some people have a lot of symptoms as a child and do well as an adult. Some have no symptoms until later in life. Some people are pancreatic sufficient, meaning that they do not need enzymes.

I encourage you to do a lot of research on CF yourself and educate yourself. My daughter is 3 and also is a double Delta F508 and she has been hospitalized 5 times already, had a Nissen Fundoplication surgery due to severe reflux and been on IV medications 4 times already. She has to take enzymes, among a lot of other meds. But I have a friend who has a 4 year old son, also a double delta F508 and he has never been in the hospital, never had IV antibiotics and never cultured anything to really worry about. So this is just an example of how all people with CF are different, and have different symptoms that present at different times.

I am not sure what CMV is that your were referring to. Are you in the United States and if not where do you live?

 

[rcq925]

If your child has 2 Delta F508 genes, then she has CF. Everyone with CF is different. Some people have a lot of symptoms as a child and do well as an adult. Some have no symptoms until later in life. Some people are pancreatic sufficient, meaning that they do not need enzymes.

I encourage you to do a lot of research on CF yourself and educate yourself. My daughter is 3 and also is a double Delta F508 and she has been hospitalized 5 times already, had a Nissen Fundoplication surgery due to severe reflux and been on IV medications 4 times already. She has to take enzymes, among a lot of other meds. But I have a friend who has a 4 year old son, also a double delta F508 and he has never been in the hospital, never had IV antibiotics and never cultured anything to really worry about. So this is just an example of how all people with CF are different, and have different symptoms that present at different times.

I am not sure what CMV is that your were referring to. Are you in the United States and if not where do you live?

 

[rcq925]

If your child has 2 Delta F508 genes, then she has CF. Everyone with CF is different. Some people have a lot of symptoms as a child and do well as an adult. Some have no symptoms until later in life. Some people are pancreatic sufficient, meaning that they do not need enzymes.

I encourage you to do a lot of research on CF yourself and educate yourself. My daughter is 3 and also is a double Delta F508 and she has been hospitalized 5 times already, had a Nissen Fundoplication surgery due to severe reflux and been on IV medications 4 times already. She has to take enzymes, among a lot of other meds. But I have a friend who has a 4 year old son, also a double delta F508 and he has never been in the hospital, never had IV antibiotics and never cultured anything to really worry about. So this is just an example of how all people with CF are different, and have different symptoms that present at different times.

I am not sure what CMV is that your were referring to. Are you in the United States and if not where do you live?

 

[rcq925]

If your child has 2 Delta F508 genes, then she has CF. Everyone with CF is different. Some people have a lot of symptoms as a child and do well as an adult. Some have no symptoms until later in life. Some people are pancreatic sufficient, meaning that they do not need enzymes.

I encourage you to do a lot of research on CF yourself and educate yourself. My daughter is 3 and also is a double Delta F508 and she has been hospitalized 5 times already, had a Nissen Fundoplication surgery due to severe reflux and been on IV medications 4 times already. She has to take enzymes, among a lot of other meds. But I have a friend who has a 4 year old son, also a double delta F508 and he has never been in the hospital, never had IV antibiotics and never cultured anything to really worry about. So this is just an example of how all people with CF are different, and have different symptoms that present at different times.

I am not sure what CMV is that your were referring to. Are you in the United States and if not where do you live?

 

[rcq925]

If your child has 2 Delta F508 genes, then she has CF. Everyone with CF is different. Some people have a lot of symptoms as a child and do well as an adult. Some have no symptoms until later in life. Some people are pancreatic sufficient, meaning that they do not need enzymes.

I encourage you to do a lot of research on CF yourself and educate yourself. My daughter is 3 and also is a double Delta F508 and she has been hospitalized 5 times already, had a Nissen Fundoplication surgery due to severe reflux and been on IV medications 4 times already. She has to take enzymes, among a lot of other meds. But I have a friend who has a 4 year old son, also a double delta F508 and he has never been in the hospital, never had IV antibiotics and never cultured anything to really worry about. So this is just an example of how all people with CF are different, and have different symptoms that present at different times.

I am not sure what CMV is that your were referring to. Are you in the United States and if not where do you live?

 

[rcq925]

If your child has 2 Delta F508 genes, then she has CF. Everyone with CF is different. Some people have a lot of symptoms as a child and do well as an adult. Some have no symptoms until later in life. Some people are pancreatic sufficient, meaning that they do not need enzymes.

I encourage you to do a lot of research on CF yourself and educate yourself. My daughter is 3 and also is a double Delta F508 and she has been hospitalized 5 times already, had a Nissen Fundoplication surgery due to severe reflux and been on IV medications 4 times already. She has to take enzymes, among a lot of other meds. But I have a friend who has a 4 year old son, also a double delta F508 and he has never been in the hospital, never had IV antibiotics and never cultured anything to really worry about. So this is just an example of how all people with CF are different, and have different symptoms that present at different times.

I am not sure what CMV is that your were referring to. Are you in the United States and if not where do you live?

 

[Ratatosk]

CFers are born with normal lungs. So it's important to be proactive. And you may feel you are wasting yor time, but so far she's cooperating with CPT -- can you imagine if she was older and you started doing CPT. Friend of mine's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT took over an hour because she would scream and fight it the entire time. My friends granddaughter has the same mutation as DS, but mainly has constipation issues, while DS if he doesn't get enough enzymes has looser, sometimes greasier stools. Both were failure to thrive. DS has mainly sinus issues, the other child got RSV as a newborn and has more lung issues. DS cultures pseudo. She hasn't yet.

If both you and your husband are carriers for delta f508, then she, having CF would have two copies of delta f508.

I'm trying to figure out where are you geting the F508C from?

 

[Ratatosk]

CFers are born with normal lungs. So it's important to be proactive. And you may feel you are wasting yor time, but so far she's cooperating with CPT -- can you imagine if she was older and you started doing CPT. Friend of mine's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT took over an hour because she would scream and fight it the entire time. My friends granddaughter has the same mutation as DS, but mainly has constipation issues, while DS if he doesn't get enough enzymes has looser, sometimes greasier stools. Both were failure to thrive. DS has mainly sinus issues, the other child got RSV as a newborn and has more lung issues. DS cultures pseudo. She hasn't yet.

If both you and your husband are carriers for delta f508, then she, having CF would have two copies of delta f508.

I'm trying to figure out where are you geting the F508C from?

 

[Ratatosk]

CFers are born with normal lungs. So it's important to be proactive. And you may feel you are wasting yor time, but so far she's cooperating with CPT -- can you imagine if she was older and you started doing CPT. Friend of mine's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT took over an hour because she would scream and fight it the entire time. My friends granddaughter has the same mutation as DS, but mainly has constipation issues, while DS if he doesn't get enough enzymes has looser, sometimes greasier stools. Both were failure to thrive. DS has mainly sinus issues, the other child got RSV as a newborn and has more lung issues. DS cultures pseudo. She hasn't yet.

If both you and your husband are carriers for delta f508, then she, having CF would have two copies of delta f508.

I'm trying to figure out where are you geting the F508C from?

 

[Ratatosk]

CFers are born with normal lungs. So it's important to be proactive. And you may feel you are wasting yor time, but so far she's cooperating with CPT -- can you imagine if she was older and you started doing CPT. Friend of mine's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT took over an hour because she would scream and fight it the entire time. My friends granddaughter has the same mutation as DS, but mainly has constipation issues, while DS if he doesn't get enough enzymes has looser, sometimes greasier stools. Both were failure to thrive. DS has mainly sinus issues, the other child got RSV as a newborn and has more lung issues. DS cultures pseudo. She hasn't yet.

If both you and your husband are carriers for delta f508, then she, having CF would have two copies of delta f508.

I'm trying to figure out where are you geting the F508C from?

 

[Ratatosk]

CFers are born with normal lungs. So it's important to be proactive. And you may feel you are wasting yor time, but so far she's cooperating with CPT -- can you imagine if she was older and you started doing CPT. Friend of mine's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT took over an hour because she would scream and fight it the entire time. My friends granddaughter has the same mutation as DS, but mainly has constipation issues, while DS if he doesn't get enough enzymes has looser, sometimes greasier stools. Both were failure to thrive. DS has mainly sinus issues, the other child got RSV as a newborn and has more lung issues. DS cultures pseudo. She hasn't yet.

If both you and your husband are carriers for delta f508, then she, having CF would have two copies of delta f508.

I'm trying to figure out where are you geting the F508C from?

 

[Ratatosk]

CFers are born with normal lungs. So it's important to be proactive. And you may feel you are wasting yor time, but so far she's cooperating with CPT -- can you imagine if she was older and you started doing CPT. Friend of mine's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT took over an hour because she would scream and fight it the entire time. My friends granddaughter has the same mutation as DS, but mainly has constipation issues, while DS if he doesn't get enough enzymes has looser, sometimes greasier stools. Both were failure to thrive. DS has mainly sinus issues, the other child got RSV as a newborn and has more lung issues. DS cultures pseudo. She hasn't yet.

If both you and your husband are carriers for delta f508, then she, having CF would have two copies of delta f508.

I'm trying to figure out where are you geting the F508C from?

 

[AnD]

I am 36 years old, and if I remember right (I was supposed to double check at my last clinic visit, and forgot<img src="i/expressions/face-icon-small-blush.gif" border="0">), I have the double DF508.

I had meconimum illius at birth, was on low dose of enzymes (they also had to decrease mine as an infant), and had absolutely no pulmonary symptoms until I had one bout of bronchitis at 13. I currently still only take an enzyme with a really fatty meal.

At 16, I had my gallbladder out (stones), and caught pneumonia in the hospital, and have fought it ever since. So yes, using me as an example, it is possible to be almost asymptomatic, and still have the most common genes. I hope she continues to do so well- please continue to do all the preventative therapies that your doctor has prescribed, and perhaps (and prayerfully) she will be one of the "mild" cases long into adulthood <img src="i/expressions/face-icon-small-wink.gif" border="0"> . It's so easy to take it for granted...

 

[AnD]

I am 36 years old, and if I remember right (I was supposed to double check at my last clinic visit, and forgot<img src="i/expressions/face-icon-small-blush.gif" border="0">), I have the double DF508.

I had meconimum illius at birth, was on low dose of enzymes (they also had to decrease mine as an infant), and had absolutely no pulmonary symptoms until I had one bout of bronchitis at 13. I currently still only take an enzyme with a really fatty meal.

At 16, I had my gallbladder out (stones), and caught pneumonia in the hospital, and have fought it ever since. So yes, using me as an example, it is possible to be almost asymptomatic, and still have the most common genes. I hope she continues to do so well- please continue to do all the preventative therapies that your doctor has prescribed, and perhaps (and prayerfully) she will be one of the "mild" cases long into adulthood <img src="i/expressions/face-icon-small-wink.gif" border="0"> . It's so easy to take it for granted...