Hi! My son was cleared of having CF last spring after Genzyme amplified genetic testing came up finding no mutations. He had a borerline/positive sweat test and failure to thrive which prompted the CF testing last winter. We were very relieved to find out he did not have CF; however, he now has pneumonia in both lungs all over the place. He is not sick otherwise, just sounds horrible. Both the DR. and NP said his lungs sound like "CF lungs." He is on his second round of anitbiotics and is on zithromax now. I am worried that won't be enough and if his lungs don't clear up with that, what is next? I can't help but wonder if he still might have CF having this lung problem. I mean regular kids get pneumonia in some places in their lungs, but his lungs are sooo involved, how common is that in regular kids? Does anyone have a child diagnosed with CF that do not have any gene mutations?
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anyone dx'd with CF without known mutations?
- Thread starter asiewny
- Start date
Hi! My son was cleared of having CF last spring after Genzyme amplified genetic testing came up finding no mutations. He had a borerline/positive sweat test and failure to thrive which prompted the CF testing last winter. We were very relieved to find out he did not have CF; however, he now has pneumonia in both lungs all over the place. He is not sick otherwise, just sounds horrible. Both the DR. and NP said his lungs sound like "CF lungs." He is on his second round of anitbiotics and is on zithromax now. I am worried that won't be enough and if his lungs don't clear up with that, what is next? I can't help but wonder if he still might have CF having this lung problem. I mean regular kids get pneumonia in some places in their lungs, but his lungs are sooo involved, how common is that in regular kids? Does anyone have a child diagnosed with CF that do not have any gene mutations?
Hi! My son was cleared of having CF last spring after Genzyme amplified genetic testing came up finding no mutations. He had a borerline/positive sweat test and failure to thrive which prompted the CF testing last winter. We were very relieved to find out he did not have CF; however, he now has pneumonia in both lungs all over the place. He is not sick otherwise, just sounds horrible. Both the DR. and NP said his lungs sound like "CF lungs." He is on his second round of anitbiotics and is on zithromax now. I am worried that won't be enough and if his lungs don't clear up with that, what is next? I can't help but wonder if he still might have CF having this lung problem. I mean regular kids get pneumonia in some places in their lungs, but his lungs are sooo involved, how common is that in regular kids? Does anyone have a child diagnosed with CF that do not have any gene mutations?
Hi! My son was cleared of having CF last spring after Genzyme amplified genetic testing came up finding no mutations. He had a borerline/positive sweat test and failure to thrive which prompted the CF testing last winter. We were very relieved to find out he did not have CF; however, he now has pneumonia in both lungs all over the place. He is not sick otherwise, just sounds horrible. Both the DR. and NP said his lungs sound like "CF lungs." He is on his second round of anitbiotics and is on zithromax now. I am worried that won't be enough and if his lungs don't clear up with that, what is next? I can't help but wonder if he still might have CF having this lung problem. I mean regular kids get pneumonia in some places in their lungs, but his lungs are sooo involved, how common is that in regular kids? Does anyone have a child diagnosed with CF that do not have any gene mutations?
Hi! My son was cleared of having CF last spring after Genzyme amplified genetic testing came up finding no mutations. He had a borerline/positive sweat test and failure to thrive which prompted the CF testing last winter. We were very relieved to find out he did not have CF; however, he now has pneumonia in both lungs all over the place. He is not sick otherwise, just sounds horrible. Both the DR. and NP said his lungs sound like "CF lungs." He is on his second round of anitbiotics and is on zithromax now. I am worried that won't be enough and if his lungs don't clear up with that, what is next? I can't help but wonder if he still might have CF having this lung problem. I mean regular kids get pneumonia in some places in their lungs, but his lungs are sooo involved, how common is that in regular kids? Does anyone have a child diagnosed with CF that do not have any gene mutations?
M
Mommafirst
Guest
There are other illnesses that can resemble CF. Schwachmann-Diamond Syndrome (SDS) has both the digestive and lung issues like CF and often causes false positives on the sweat test. Primary Ciliary Dyskinesia (PCD) has almost identical CF-like lung symptoms and is treated in almost the same way. The biggest difference between CF and PCD is that PCD lungs don't progressly get worse in the same way that CFers do.
So while you should continue to find information on CF, it sounds like you need a good pulmonologist to help you rule out these other two diseases before givine a symptom-based diagnosis of CF.
So while you should continue to find information on CF, it sounds like you need a good pulmonologist to help you rule out these other two diseases before givine a symptom-based diagnosis of CF.
M
Mommafirst
Guest
There are other illnesses that can resemble CF. Schwachmann-Diamond Syndrome (SDS) has both the digestive and lung issues like CF and often causes false positives on the sweat test. Primary Ciliary Dyskinesia (PCD) has almost identical CF-like lung symptoms and is treated in almost the same way. The biggest difference between CF and PCD is that PCD lungs don't progressly get worse in the same way that CFers do.
So while you should continue to find information on CF, it sounds like you need a good pulmonologist to help you rule out these other two diseases before givine a symptom-based diagnosis of CF.
So while you should continue to find information on CF, it sounds like you need a good pulmonologist to help you rule out these other two diseases before givine a symptom-based diagnosis of CF.
M
Mommafirst
Guest
There are other illnesses that can resemble CF. Schwachmann-Diamond Syndrome (SDS) has both the digestive and lung issues like CF and often causes false positives on the sweat test. Primary Ciliary Dyskinesia (PCD) has almost identical CF-like lung symptoms and is treated in almost the same way. The biggest difference between CF and PCD is that PCD lungs don't progressly get worse in the same way that CFers do.
So while you should continue to find information on CF, it sounds like you need a good pulmonologist to help you rule out these other two diseases before givine a symptom-based diagnosis of CF.
So while you should continue to find information on CF, it sounds like you need a good pulmonologist to help you rule out these other two diseases before givine a symptom-based diagnosis of CF.
M
Mommafirst
Guest
There are other illnesses that can resemble CF. Schwachmann-Diamond Syndrome (SDS) has both the digestive and lung issues like CF and often causes false positives on the sweat test. Primary Ciliary Dyskinesia (PCD) has almost identical CF-like lung symptoms and is treated in almost the same way. The biggest difference between CF and PCD is that PCD lungs don't progressly get worse in the same way that CFers do.
So while you should continue to find information on CF, it sounds like you need a good pulmonologist to help you rule out these other two diseases before givine a symptom-based diagnosis of CF.
So while you should continue to find information on CF, it sounds like you need a good pulmonologist to help you rule out these other two diseases before givine a symptom-based diagnosis of CF.
M
Mommafirst
Guest
There are other illnesses that can resemble CF. Schwachmann-Diamond Syndrome (SDS) has both the digestive and lung issues like CF and often causes false positives on the sweat test. Primary Ciliary Dyskinesia (PCD) has almost identical CF-like lung symptoms and is treated in almost the same way. The biggest difference between CF and PCD is that PCD lungs don't progressly get worse in the same way that CFers do.
<br />
<br />So while you should continue to find information on CF, it sounds like you need a good pulmonologist to help you rule out these other two diseases before givine a symptom-based diagnosis of CF.
<br />
<br />So while you should continue to find information on CF, it sounds like you need a good pulmonologist to help you rule out these other two diseases before givine a symptom-based diagnosis of CF.