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Not yet diagnosed/testing this week

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Aidenmurphy

Guest
My name is Rikki and our son (Aiden) is 3 in August, was diagnosed w/ asthma last Dec, he's been on pulmacorte nebulizer, multiple allergy medicines that aren't working, and nasonex. He's been at his worse in April and May, coughs and gags and throws up mucus in the mornings, constant ear infections, croupe multiple times, pnemonia, at 8 months old he had an intusseption, (intestine blockage) We go in to Childrens Mercy in our area on Wednesday for an upper GI x-ray, chest x-ray and sweat test after seeing the allergy/asthma dr for the 2nd time and he said that he doesn't think it's asthma he has cause the nebulizer sin't helping any other of his symptoms (runny nose, cough, ear drainage, mucus build up), so he's referred us to a pulmenologist. Not sure if I or dad carries the CF gene. Does this sound like it could be a possibility?
 
A

Aidenmurphy

Guest
My name is Rikki and our son (Aiden) is 3 in August, was diagnosed w/ asthma last Dec, he's been on pulmacorte nebulizer, multiple allergy medicines that aren't working, and nasonex. He's been at his worse in April and May, coughs and gags and throws up mucus in the mornings, constant ear infections, croupe multiple times, pnemonia, at 8 months old he had an intusseption, (intestine blockage) We go in to Childrens Mercy in our area on Wednesday for an upper GI x-ray, chest x-ray and sweat test after seeing the allergy/asthma dr for the 2nd time and he said that he doesn't think it's asthma he has cause the nebulizer sin't helping any other of his symptoms (runny nose, cough, ear drainage, mucus build up), so he's referred us to a pulmenologist. Not sure if I or dad carries the CF gene. Does this sound like it could be a possibility?
 
A

Aidenmurphy

Guest
My name is Rikki and our son (Aiden) is 3 in August, was diagnosed w/ asthma last Dec, he's been on pulmacorte nebulizer, multiple allergy medicines that aren't working, and nasonex. He's been at his worse in April and May, coughs and gags and throws up mucus in the mornings, constant ear infections, croupe multiple times, pnemonia, at 8 months old he had an intusseption, (intestine blockage) We go in to Childrens Mercy in our area on Wednesday for an upper GI x-ray, chest x-ray and sweat test after seeing the allergy/asthma dr for the 2nd time and he said that he doesn't think it's asthma he has cause the nebulizer sin't helping any other of his symptoms (runny nose, cough, ear drainage, mucus build up), so he's referred us to a pulmenologist. Not sure if I or dad carries the CF gene. Does this sound like it could be a possibility?
 

NoExcuses

New member
Make sure to get an Ambry Amplified genetic test.

This is the only test that will catch all known CF mutations.
 

NoExcuses

New member
Make sure to get an Ambry Amplified genetic test.

This is the only test that will catch all known CF mutations.
 

NoExcuses

New member
Make sure to get an Ambry Amplified genetic test.

This is the only test that will catch all known CF mutations.
 
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Aidenmurphy

Guest
Thank you that's what everyone is telling me and would have to say you guys know what you're talking about.... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Aidenmurphy

Guest
Thank you that's what everyone is telling me and would have to say you guys know what you're talking about.... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

Aidenmurphy

Guest
Thank you that's what everyone is telling me and would have to say you guys know what you're talking about.... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ktsmom

New member
CF could be a possibility but it sounds like you are taking the right road to finding out. The sweat test can lead to a diagnosis and I hope you get those results quickly. If the sweat test is borderline then you would definitely want to push for the Ambry Amplified genetic test. Good luck and please let us know!
 

ktsmom

New member
CF could be a possibility but it sounds like you are taking the right road to finding out. The sweat test can lead to a diagnosis and I hope you get those results quickly. If the sweat test is borderline then you would definitely want to push for the Ambry Amplified genetic test. Good luck and please let us know!
 

ktsmom

New member
CF could be a possibility but it sounds like you are taking the right road to finding out. The sweat test can lead to a diagnosis and I hope you get those results quickly. If the sweat test is borderline then you would definitely want to push for the Ambry Amplified genetic test. Good luck and please let us know!
 

NoExcuses

New member
Be careful with sweat tests. They aren't as accurate as genetic testing and are quite pointless when genetic testing exists.
 

NoExcuses

New member
Be careful with sweat tests. They aren't as accurate as genetic testing and are quite pointless when genetic testing exists.
 

NoExcuses

New member
Be careful with sweat tests. They aren't as accurate as genetic testing and are quite pointless when genetic testing exists.
 

okok

New member
As someone whose daughter had one false negative sweat test and concerns/ hopes that following sweat tests were falsely positive, i feel i can defend the sweat test. Yes the sweat test is absolutely subject to both false negative and false positive (as nearly all labrotory tests are) results but genetic testing is not foolproof either. Even the ambry amplified test is not always able to detect mutations that can cause disease leading to a negative genetic testing when in fact the individual may still have CF. In these cases the sweat test can be very helpful because it indicates a CFTR defect through a physiological observation. Also sometimes the ambry testing (due to it's thoroughness) may detect genetic variation that is not actually disease causing but this may not be known. In these cases the sweat test can help doctors interept the results of ambiguous genetic testing. I think the sweat test should be done in conjucntion with genetic testing. I believe that the rapid sweat test results can lead to earlier treatment when the sweat test is clearly positive. It is important that the sweat test is preformed properly and that the results are interpreted by a knowledgable doctor. Make sure Aiden's sweat test is preformed at a CF accredited hospital. Borderline results (a sweat chloride over 30) should absolutely be followed up by genetic testing.

good luck!
 

okok

New member
As someone whose daughter had one false negative sweat test and concerns/ hopes that following sweat tests were falsely positive, i feel i can defend the sweat test. Yes the sweat test is absolutely subject to both false negative and false positive (as nearly all labrotory tests are) results but genetic testing is not foolproof either. Even the ambry amplified test is not always able to detect mutations that can cause disease leading to a negative genetic testing when in fact the individual may still have CF. In these cases the sweat test can be very helpful because it indicates a CFTR defect through a physiological observation. Also sometimes the ambry testing (due to it's thoroughness) may detect genetic variation that is not actually disease causing but this may not be known. In these cases the sweat test can help doctors interept the results of ambiguous genetic testing. I think the sweat test should be done in conjucntion with genetic testing. I believe that the rapid sweat test results can lead to earlier treatment when the sweat test is clearly positive. It is important that the sweat test is preformed properly and that the results are interpreted by a knowledgable doctor. Make sure Aiden's sweat test is preformed at a CF accredited hospital. Borderline results (a sweat chloride over 30) should absolutely be followed up by genetic testing.

good luck!
 

okok

New member
As someone whose daughter had one false negative sweat test and concerns/ hopes that following sweat tests were falsely positive, i feel i can defend the sweat test. Yes the sweat test is absolutely subject to both false negative and false positive (as nearly all labrotory tests are) results but genetic testing is not foolproof either. Even the ambry amplified test is not always able to detect mutations that can cause disease leading to a negative genetic testing when in fact the individual may still have CF. In these cases the sweat test can be very helpful because it indicates a CFTR defect through a physiological observation. Also sometimes the ambry testing (due to it's thoroughness) may detect genetic variation that is not actually disease causing but this may not be known. In these cases the sweat test can help doctors interept the results of ambiguous genetic testing. I think the sweat test should be done in conjucntion with genetic testing. I believe that the rapid sweat test results can lead to earlier treatment when the sweat test is clearly positive. It is important that the sweat test is preformed properly and that the results are interpreted by a knowledgable doctor. Make sure Aiden's sweat test is preformed at a CF accredited hospital. Borderline results (a sweat chloride over 30) should absolutely be followed up by genetic testing.

good luck!
 
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Aidenmurphy

Guest
We are going to Children's Mercy Hospital and it is accredited through CFF. I know nothing of the fathers background and I was wondering how possible it would be for Aiden to have it if it's not in either of our background?
 
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Aidenmurphy

Guest
We are going to Children's Mercy Hospital and it is accredited through CFF. I know nothing of the fathers background and I was wondering how possible it would be for Aiden to have it if it's not in either of our background?
 
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