Negative sweat test, but still have CF

[traxster]

My son has had a history of chronic sinusitis, chronic bronchitis, nasal polyps, and asthma. He is being followed by UNC pulmonary.

He had a negative sweat test in April. But, since then, he has been hospitalized once, and has grown both achromobacter and most recently pseudomonas in his lungs. The doctor sent his blood in for genetic testing and one marker came back. I can't remember the name, she was talking so fast! But now they sent his blood off to test against all known mutations of CF and if one of those come back, then we will have the diagnosis.

She has only known of one other person in her practice who has had a negative sweat test but still have CF. Right now, they treat him as a CF patient. If the most recent sputum culture comes back with pseudomonas again, she is going to start him on Tobi. So she seems to think that is what it is.

Is there anyone else out there who has gone through this? He is 7 years old, growing normally, healthy appetite with no other of the more common symptoms of CF, although from my research, the various mutations will account for the difference in symptoms.

Thanks in advance! We won't get the test results back for 2-4 weeks, so the waiting has begun.

 

[traxster]

My son has had a history of chronic sinusitis, chronic bronchitis, nasal polyps, and asthma. He is being followed by UNC pulmonary.

He had a negative sweat test in April. But, since then, he has been hospitalized once, and has grown both achromobacter and most recently pseudomonas in his lungs. The doctor sent his blood in for genetic testing and one marker came back. I can't remember the name, she was talking so fast! But now they sent his blood off to test against all known mutations of CF and if one of those come back, then we will have the diagnosis.

She has only known of one other person in her practice who has had a negative sweat test but still have CF. Right now, they treat him as a CF patient. If the most recent sputum culture comes back with pseudomonas again, she is going to start him on Tobi. So she seems to think that is what it is.

Is there anyone else out there who has gone through this? He is 7 years old, growing normally, healthy appetite with no other of the more common symptoms of CF, although from my research, the various mutations will account for the difference in symptoms.

Thanks in advance! We won't get the test results back for 2-4 weeks, so the waiting has begun.

 

[traxster]

My son has had a history of chronic sinusitis, chronic bronchitis, nasal polyps, and asthma. He is being followed by UNC pulmonary.
<br />
<br />He had a negative sweat test in April. But, since then, he has been hospitalized once, and has grown both achromobacter and most recently pseudomonas in his lungs. The doctor sent his blood in for genetic testing and one marker came back. I can't remember the name, she was talking so fast! But now they sent his blood off to test against all known mutations of CF and if one of those come back, then we will have the diagnosis.
<br />
<br />She has only known of one other person in her practice who has had a negative sweat test but still have CF. Right now, they treat him as a CF patient. If the most recent sputum culture comes back with pseudomonas again, she is going to start him on Tobi. So she seems to think that is what it is.
<br />
<br />Is there anyone else out there who has gone through this? He is 7 years old, growing normally, healthy appetite with no other of the more common symptoms of CF, although from my research, the various mutations will account for the difference in symptoms.
<br />
<br />Thanks in advance! We won't get the test results back for 2-4 weeks, so the waiting has begun.

 

[kgfrompa]

Hi My Name is Kathy I had a negative sweat test and two weeks later the doc said he about fell off his chair when the Ambry test came back knowen mutation 3849+10kbc>t and r668c I was 50 years old at the time I am now 54 I still dont know very much about the mutation. But the Doctor said he about fell off his chair when he read the results. I also grow Achromobacter and pseudomonas.

 

[kgfrompa]

Hi My Name is Kathy I had a negative sweat test and two weeks later the doc said he about fell off his chair when the Ambry test came back knowen mutation 3849+10kbc>t and r668c I was 50 years old at the time I am now 54 I still dont know very much about the mutation. But the Doctor said he about fell off his chair when he read the results. I also grow Achromobacter and pseudomonas.

 

[kgfrompa]

Hi My Name is Kathy I had a negative sweat test and two weeks later the doc said he about fell off his chair when the Ambry test came back knowen mutation 3849+10kbc>t and r668c I was 50 years old at the time I am now 54 I still dont know very much about the mutation. But the Doctor said he about fell off his chair when he read the results. I also grow Achromobacter and pseudomonas.

 

[beansmom]

My daughter is 4 and has a normal sweat test. She has failure to thrive, pancreatic insuffieciency and psuedomonas

 

[beansmom]

My daughter is 4 and has a normal sweat test. She has failure to thrive, pancreatic insuffieciency and psuedomonas

 

[beansmom]

My daughter is 4 and has a normal sweat test. She has failure to thrive, pancreatic insuffieciency and psuedomonas

 

[traxster]

Thank you for the replies. Beans mom...have they diagnosed her? My son is growing normally and doesn't have any pancreatic insufficiency that we know. But, I guess if there is a diagnosis once the tests come back, they will probably test him.

Kathy, wow, what a story. What made you get tested?

 

[traxster]

Thank you for the replies. Beans mom...have they diagnosed her? My son is growing normally and doesn't have any pancreatic insufficiency that we know. But, I guess if there is a diagnosis once the tests come back, they will probably test him.

Kathy, wow, what a story. What made you get tested?

 

[traxster]

Thank you for the replies. Beans mom...have they diagnosed her? My son is growing normally and doesn't have any pancreatic insufficiency that we know. But, I guess if there is a diagnosis once the tests come back, they will probably test him.
<br />
<br />Kathy, wow, what a story. What made you get tested?

 

[Ratatosk]

My son had a normal sweat test (32); however, he was 3 weeks old at the time it was done. He was born with a bowel obstruction and blood tests showed he had cf. He's pancreatic insufficient.

 

[Ratatosk]

My son had a normal sweat test (32); however, he was 3 weeks old at the time it was done. He was born with a bowel obstruction and blood tests showed he had cf. He's pancreatic insufficient.

 

[Ratatosk]

My son had a normal sweat test (32); however, he was 3 weeks old at the time it was done. He was born with a bowel obstruction and blood tests showed he had cf. He's pancreatic insufficient.

 

[JORDYSMOM]

Welcome. I'm sorry you are going through this. It is a difficult process.

We have many members here who have negative/borderline sweat test results, but who have CF (two known mutations).

You'll find a lot of good information here. You'll also find great support. Keep us posted.

Stacey

 

[JORDYSMOM]

Welcome. I'm sorry you are going through this. It is a difficult process.

We have many members here who have negative/borderline sweat test results, but who have CF (two known mutations).

You'll find a lot of good information here. You'll also find great support. Keep us posted.

Stacey

 

[JORDYSMOM]

Welcome. I'm sorry you are going through this. It is a difficult process.
<br />
<br />We have many members here who have negative/borderline sweat test results, but who have CF (two known mutations).
<br />
<br />You'll find a lot of good information here. You'll also find great support. Keep us posted.
<br />
<br />Stacey

 

[kgfrompa]

They removed most of my left lung said That i had emphysema when I was 49 I started having problems with kidney stones in my teens then had gall bladder removed at 19.Also I have had 14 chest tubes always sick the answer is I got on SSI and had health insurance and I ended up at NIH where they had my doctor do the testing that gave me the answer.Thank you for asking Kathy

 

[kgfrompa]

They removed most of my left lung said That i had emphysema when I was 49 I started having problems with kidney stones in my teens then had gall bladder removed at 19.Also I have had 14 chest tubes always sick the answer is I got on SSI and had health insurance and I ended up at NIH where they had my doctor do the testing that gave me the answer.Thank you for asking Kathy