hi i wrote on here a couple of months ago my son had three sweat tests done two came back equivical and 1 below does my sone have cf or not his doctor keeps telling us that he does not want to put him into the cf bracket my head is all over the place he had a mutations test and this came back neg please please help me
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still not sure
- Thread starter faceache
- Start date
hi i wrote on here a couple of months ago my son had three sweat tests done two came back equivical and 1 below does my sone have cf or not his doctor keeps telling us that he does not want to put him into the cf bracket my head is all over the place he had a mutations test and this came back neg please please help me
hi i wrote on here a couple of months ago my son had three sweat tests done two came back equivical and 1 below does my sone have cf or not his doctor keeps telling us that he does not want to put him into the cf bracket my head is all over the place he had a mutations test and this came back neg please please help me
hi i wrote on here a couple of months ago my son had three sweat tests done two came back equivical and 1 below does my sone have cf or not his doctor keeps telling us that he does not want to put him into the cf bracket my head is all over the place he had a mutations test and this came back neg please please help me
hi i wrote on here a couple of months ago my son had three sweat tests done two came back equivical and 1 below does my sone have cf or not his doctor keeps telling us that he does not want to put him into the cf bracket my head is all over the place he had a mutations test and this came back neg please please help me
Faceache,
As far as CF is concerned, you have done all that you can to determine if it is CF. What CF mutation test (testing company used) did he have done? If it only checked for the "most common" mutations, then you might need to push for the larger Ambry panel. I know you have to be panicked about your son and that finding any answers right now is the single priority. Keep us posted. I'm sorry I don't have additional information for you.
Emily
As far as CF is concerned, you have done all that you can to determine if it is CF. What CF mutation test (testing company used) did he have done? If it only checked for the "most common" mutations, then you might need to push for the larger Ambry panel. I know you have to be panicked about your son and that finding any answers right now is the single priority. Keep us posted. I'm sorry I don't have additional information for you.
Emily
Faceache,
As far as CF is concerned, you have done all that you can to determine if it is CF. What CF mutation test (testing company used) did he have done? If it only checked for the "most common" mutations, then you might need to push for the larger Ambry panel. I know you have to be panicked about your son and that finding any answers right now is the single priority. Keep us posted. I'm sorry I don't have additional information for you.
Emily
As far as CF is concerned, you have done all that you can to determine if it is CF. What CF mutation test (testing company used) did he have done? If it only checked for the "most common" mutations, then you might need to push for the larger Ambry panel. I know you have to be panicked about your son and that finding any answers right now is the single priority. Keep us posted. I'm sorry I don't have additional information for you.
Emily
Faceache,
As far as CF is concerned, you have done all that you can to determine if it is CF. What CF mutation test (testing company used) did he have done? If it only checked for the "most common" mutations, then you might need to push for the larger Ambry panel. I know you have to be panicked about your son and that finding any answers right now is the single priority. Keep us posted. I'm sorry I don't have additional information for you.
Emily
As far as CF is concerned, you have done all that you can to determine if it is CF. What CF mutation test (testing company used) did he have done? If it only checked for the "most common" mutations, then you might need to push for the larger Ambry panel. I know you have to be panicked about your son and that finding any answers right now is the single priority. Keep us posted. I'm sorry I don't have additional information for you.
Emily
Faceache,
As far as CF is concerned, you have done all that you can to determine if it is CF. What CF mutation test (testing company used) did he have done? If it only checked for the "most common" mutations, then you might need to push for the larger Ambry panel. I know you have to be panicked about your son and that finding any answers right now is the single priority. Keep us posted. I'm sorry I don't have additional information for you.
Emily
As far as CF is concerned, you have done all that you can to determine if it is CF. What CF mutation test (testing company used) did he have done? If it only checked for the "most common" mutations, then you might need to push for the larger Ambry panel. I know you have to be panicked about your son and that finding any answers right now is the single priority. Keep us posted. I'm sorry I don't have additional information for you.
Emily
Faceache,
As far as CF is concerned, you have done all that you can to determine if it is CF. What CF mutation test (testing company used) did he have done? If it only checked for the "most common" mutations, then you might need to push for the larger Ambry panel. I know you have to be panicked about your son and that finding any answers right now is the single priority. Keep us posted. I'm sorry I don't have additional information for you.
Emily
As far as CF is concerned, you have done all that you can to determine if it is CF. What CF mutation test (testing company used) did he have done? If it only checked for the "most common" mutations, then you might need to push for the larger Ambry panel. I know you have to be panicked about your son and that finding any answers right now is the single priority. Keep us posted. I'm sorry I don't have additional information for you.
Emily
I searched for your previous post to get more information about what you posted last time. I see you are in the UK and not the US so I'm not familiar with how your medical system works, but I'd say keep asking the doctor for more clarification.
It still sounds to me like, yes CF is very possible for your son, based on his symptoms and borderline sweat test results. Many people on here have normal sweat test results but do have genetically confirmed CF. Usually borderline sweat tests and CF symptoms is enough for a diagnosis or at the very least being given the opportunity to benefit from the latest CF treatments.
A couple of questions here:
1) Do you know how many genes they tested him for? I know here in the US it is quite common to start off testing with only 98 mutations -- this to me is pointless as there are now approximately 1,800 known CF genes so anything less than testing for all of them is a waste of time -- you will not know unless you test for them all.
2) Is the doctor treating him "as if he has CF" but just not marking his medical records as a CF diagnosis? Just want to know if he is getting the best treatment and care even if he isn't diagnosed with CF. What does your doctor say is the reason why he will not diagnose him with CF -- is it because the sweat tests are in the borderline range?
3) Did the doctor do any fecal fat testing to see if he is pancreatic sufficient or not? If he is having weight gain and digestive issues he is very likely pancreatic insufficient and would benefit from being given enzymes with his food. Have you gone over this type of stuff with the doctor? What does he say about adding enzymes?
Best of luck - please keep us posted.
It still sounds to me like, yes CF is very possible for your son, based on his symptoms and borderline sweat test results. Many people on here have normal sweat test results but do have genetically confirmed CF. Usually borderline sweat tests and CF symptoms is enough for a diagnosis or at the very least being given the opportunity to benefit from the latest CF treatments.
A couple of questions here:
1) Do you know how many genes they tested him for? I know here in the US it is quite common to start off testing with only 98 mutations -- this to me is pointless as there are now approximately 1,800 known CF genes so anything less than testing for all of them is a waste of time -- you will not know unless you test for them all.
2) Is the doctor treating him "as if he has CF" but just not marking his medical records as a CF diagnosis? Just want to know if he is getting the best treatment and care even if he isn't diagnosed with CF. What does your doctor say is the reason why he will not diagnose him with CF -- is it because the sweat tests are in the borderline range?
3) Did the doctor do any fecal fat testing to see if he is pancreatic sufficient or not? If he is having weight gain and digestive issues he is very likely pancreatic insufficient and would benefit from being given enzymes with his food. Have you gone over this type of stuff with the doctor? What does he say about adding enzymes?
Best of luck - please keep us posted.
I searched for your previous post to get more information about what you posted last time. I see you are in the UK and not the US so I'm not familiar with how your medical system works, but I'd say keep asking the doctor for more clarification.
It still sounds to me like, yes CF is very possible for your son, based on his symptoms and borderline sweat test results. Many people on here have normal sweat test results but do have genetically confirmed CF. Usually borderline sweat tests and CF symptoms is enough for a diagnosis or at the very least being given the opportunity to benefit from the latest CF treatments.
A couple of questions here:
1) Do you know how many genes they tested him for? I know here in the US it is quite common to start off testing with only 98 mutations -- this to me is pointless as there are now approximately 1,800 known CF genes so anything less than testing for all of them is a waste of time -- you will not know unless you test for them all.
2) Is the doctor treating him "as if he has CF" but just not marking his medical records as a CF diagnosis? Just want to know if he is getting the best treatment and care even if he isn't diagnosed with CF. What does your doctor say is the reason why he will not diagnose him with CF -- is it because the sweat tests are in the borderline range?
3) Did the doctor do any fecal fat testing to see if he is pancreatic sufficient or not? If he is having weight gain and digestive issues he is very likely pancreatic insufficient and would benefit from being given enzymes with his food. Have you gone over this type of stuff with the doctor? What does he say about adding enzymes?
Best of luck - please keep us posted.
It still sounds to me like, yes CF is very possible for your son, based on his symptoms and borderline sweat test results. Many people on here have normal sweat test results but do have genetically confirmed CF. Usually borderline sweat tests and CF symptoms is enough for a diagnosis or at the very least being given the opportunity to benefit from the latest CF treatments.
A couple of questions here:
1) Do you know how many genes they tested him for? I know here in the US it is quite common to start off testing with only 98 mutations -- this to me is pointless as there are now approximately 1,800 known CF genes so anything less than testing for all of them is a waste of time -- you will not know unless you test for them all.
2) Is the doctor treating him "as if he has CF" but just not marking his medical records as a CF diagnosis? Just want to know if he is getting the best treatment and care even if he isn't diagnosed with CF. What does your doctor say is the reason why he will not diagnose him with CF -- is it because the sweat tests are in the borderline range?
3) Did the doctor do any fecal fat testing to see if he is pancreatic sufficient or not? If he is having weight gain and digestive issues he is very likely pancreatic insufficient and would benefit from being given enzymes with his food. Have you gone over this type of stuff with the doctor? What does he say about adding enzymes?
Best of luck - please keep us posted.
I searched for your previous post to get more information about what you posted last time. I see you are in the UK and not the US so I'm not familiar with how your medical system works, but I'd say keep asking the doctor for more clarification.
It still sounds to me like, yes CF is very possible for your son, based on his symptoms and borderline sweat test results. Many people on here have normal sweat test results but do have genetically confirmed CF. Usually borderline sweat tests and CF symptoms is enough for a diagnosis or at the very least being given the opportunity to benefit from the latest CF treatments.
A couple of questions here:
1) Do you know how many genes they tested him for? I know here in the US it is quite common to start off testing with only 98 mutations -- this to me is pointless as there are now approximately 1,800 known CF genes so anything less than testing for all of them is a waste of time -- you will not know unless you test for them all.
2) Is the doctor treating him "as if he has CF" but just not marking his medical records as a CF diagnosis? Just want to know if he is getting the best treatment and care even if he isn't diagnosed with CF. What does your doctor say is the reason why he will not diagnose him with CF -- is it because the sweat tests are in the borderline range?
3) Did the doctor do any fecal fat testing to see if he is pancreatic sufficient or not? If he is having weight gain and digestive issues he is very likely pancreatic insufficient and would benefit from being given enzymes with his food. Have you gone over this type of stuff with the doctor? What does he say about adding enzymes?
Best of luck - please keep us posted.
It still sounds to me like, yes CF is very possible for your son, based on his symptoms and borderline sweat test results. Many people on here have normal sweat test results but do have genetically confirmed CF. Usually borderline sweat tests and CF symptoms is enough for a diagnosis or at the very least being given the opportunity to benefit from the latest CF treatments.
A couple of questions here:
1) Do you know how many genes they tested him for? I know here in the US it is quite common to start off testing with only 98 mutations -- this to me is pointless as there are now approximately 1,800 known CF genes so anything less than testing for all of them is a waste of time -- you will not know unless you test for them all.
2) Is the doctor treating him "as if he has CF" but just not marking his medical records as a CF diagnosis? Just want to know if he is getting the best treatment and care even if he isn't diagnosed with CF. What does your doctor say is the reason why he will not diagnose him with CF -- is it because the sweat tests are in the borderline range?
3) Did the doctor do any fecal fat testing to see if he is pancreatic sufficient or not? If he is having weight gain and digestive issues he is very likely pancreatic insufficient and would benefit from being given enzymes with his food. Have you gone over this type of stuff with the doctor? What does he say about adding enzymes?
Best of luck - please keep us posted.
I searched for your previous post to get more information about what you posted last time. I see you are in the UK and not the US so I'm not familiar with how your medical system works, but I'd say keep asking the doctor for more clarification.
It still sounds to me like, yes CF is very possible for your son, based on his symptoms and borderline sweat test results. Many people on here have normal sweat test results but do have genetically confirmed CF. Usually borderline sweat tests and CF symptoms is enough for a diagnosis or at the very least being given the opportunity to benefit from the latest CF treatments.
A couple of questions here:
1) Do you know how many genes they tested him for? I know here in the US it is quite common to start off testing with only 98 mutations -- this to me is pointless as there are now approximately 1,800 known CF genes so anything less than testing for all of them is a waste of time -- you will not know unless you test for them all.
2) Is the doctor treating him "as if he has CF" but just not marking his medical records as a CF diagnosis? Just want to know if he is getting the best treatment and care even if he isn't diagnosed with CF. What does your doctor say is the reason why he will not diagnose him with CF -- is it because the sweat tests are in the borderline range?
3) Did the doctor do any fecal fat testing to see if he is pancreatic sufficient or not? If he is having weight gain and digestive issues he is very likely pancreatic insufficient and would benefit from being given enzymes with his food. Have you gone over this type of stuff with the doctor? What does he say about adding enzymes?
Best of luck - please keep us posted.
It still sounds to me like, yes CF is very possible for your son, based on his symptoms and borderline sweat test results. Many people on here have normal sweat test results but do have genetically confirmed CF. Usually borderline sweat tests and CF symptoms is enough for a diagnosis or at the very least being given the opportunity to benefit from the latest CF treatments.
A couple of questions here:
1) Do you know how many genes they tested him for? I know here in the US it is quite common to start off testing with only 98 mutations -- this to me is pointless as there are now approximately 1,800 known CF genes so anything less than testing for all of them is a waste of time -- you will not know unless you test for them all.
2) Is the doctor treating him "as if he has CF" but just not marking his medical records as a CF diagnosis? Just want to know if he is getting the best treatment and care even if he isn't diagnosed with CF. What does your doctor say is the reason why he will not diagnose him with CF -- is it because the sweat tests are in the borderline range?
3) Did the doctor do any fecal fat testing to see if he is pancreatic sufficient or not? If he is having weight gain and digestive issues he is very likely pancreatic insufficient and would benefit from being given enzymes with his food. Have you gone over this type of stuff with the doctor? What does he say about adding enzymes?
Best of luck - please keep us posted.
I searched for your previous post to get more information about what you posted last time. I see you are in the UK and not the US so I'm not familiar with how your medical system works, but I'd say keep asking the doctor for more clarification.
It still sounds to me like, yes CF is very possible for your son, based on his symptoms and borderline sweat test results. Many people on here have normal sweat test results but do have genetically confirmed CF. Usually borderline sweat tests and CF symptoms is enough for a diagnosis or at the very least being given the opportunity to benefit from the latest CF treatments.
A couple of questions here:
1) Do you know how many genes they tested him for? I know here in the US it is quite common to start off testing with only 98 mutations -- this to me is pointless as there are now approximately 1,800 known CF genes so anything less than testing for all of them is a waste of time -- you will not know unless you test for them all.
2) Is the doctor treating him "as if he has CF" but just not marking his medical records as a CF diagnosis? Just want to know if he is getting the best treatment and care even if he isn't diagnosed with CF. What does your doctor say is the reason why he will not diagnose him with CF -- is it because the sweat tests are in the borderline range?
3) Did the doctor do any fecal fat testing to see if he is pancreatic sufficient or not? If he is having weight gain and digestive issues he is very likely pancreatic insufficient and would benefit from being given enzymes with his food. Have you gone over this type of stuff with the doctor? What does he say about adding enzymes?
Best of luck - please keep us posted.
It still sounds to me like, yes CF is very possible for your son, based on his symptoms and borderline sweat test results. Many people on here have normal sweat test results but do have genetically confirmed CF. Usually borderline sweat tests and CF symptoms is enough for a diagnosis or at the very least being given the opportunity to benefit from the latest CF treatments.
A couple of questions here:
1) Do you know how many genes they tested him for? I know here in the US it is quite common to start off testing with only 98 mutations -- this to me is pointless as there are now approximately 1,800 known CF genes so anything less than testing for all of them is a waste of time -- you will not know unless you test for them all.
2) Is the doctor treating him "as if he has CF" but just not marking his medical records as a CF diagnosis? Just want to know if he is getting the best treatment and care even if he isn't diagnosed with CF. What does your doctor say is the reason why he will not diagnose him with CF -- is it because the sweat tests are in the borderline range?
3) Did the doctor do any fecal fat testing to see if he is pancreatic sufficient or not? If he is having weight gain and digestive issues he is very likely pancreatic insufficient and would benefit from being given enzymes with his food. Have you gone over this type of stuff with the doctor? What does he say about adding enzymes?
Best of luck - please keep us posted.