Chronic sinusitis--could it possibly be CF?

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jerse0440</b></i>



Melissa, do you know if the mom that you spoke of is still on this board? I would love to hear what her history is, or anyone who may have been down a similar path.

Thanks again for your feedback.</end quote></div>

Sorry, but I havent seen her on the board in years. She was a mom to 4 children. 3 of whom were triplets with some special needs.

I also believe HollyCatheryn had sinus issues. Cant remember when she was diagnosed tho. She doesnt come on here often anymore, but she was a website & email that you can reach her....

<a target=_blank class=ftalternatingbarlinklarge href="http://www.geocities.com/MurrensNatureMama/
">http://www.geocities.com/MurrensNatureMama/
</a>
Good Luck

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jerse0440</b></i>



Melissa, do you know if the mom that you spoke of is still on this board? I would love to hear what her history is, or anyone who may have been down a similar path.

Thanks again for your feedback.</end quote></div>

Sorry, but I havent seen her on the board in years. She was a mom to 4 children. 3 of whom were triplets with some special needs.

I also believe HollyCatheryn had sinus issues. Cant remember when she was diagnosed tho. She doesnt come on here often anymore, but she was a website & email that you can reach her....

<a target=_blank class=ftalternatingbarlinklarge href="http://www.geocities.com/MurrensNatureMama/
">http://www.geocities.com/MurrensNatureMama/
</a>
Good Luck

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jerse0440</b></i>



Melissa, do you know if the mom that you spoke of is still on this board? I would love to hear what her history is, or anyone who may have been down a similar path.

Thanks again for your feedback.</end quote></div>

Sorry, but I havent seen her on the board in years. She was a mom to 4 children. 3 of whom were triplets with some special needs.

I also believe HollyCatheryn had sinus issues. Cant remember when she was diagnosed tho. She doesnt come on here often anymore, but she was a website & email that you can reach her....

<a target=_blank class=ftalternatingbarlinklarge href="http://www.geocities.com/MurrensNatureMama/
">http://www.geocities.com/MurrensNatureMama/
</a>
Good Luck

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jerse0440</b></i>



Melissa, do you know if the mom that you spoke of is still on this board? I would love to hear what her history is, or anyone who may have been down a similar path.

Thanks again for your feedback.</end quote>

Sorry, but I havent seen her on the board in years. She was a mom to 4 children. 3 of whom were triplets with some special needs.

I also believe HollyCatheryn had sinus issues. Cant remember when she was diagnosed tho. She doesnt come on here often anymore, but she was a website & email that you can reach her....

<a target=_blank class=ftalternatingbarlinklarge href="http://www.geocities.com/MurrensNatureMama/
">http://www.geocities.com/MurrensNatureMama/
</a>
Good Luck

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jerse0440</b></i>
<br />
<br />
<br />
<br />Melissa, do you know if the mom that you spoke of is still on this board? I would love to hear what her history is, or anyone who may have been down a similar path.
<br />
<br />Thanks again for your feedback.</end quote>
<br />
<br />Sorry, but I havent seen her on the board in years. She was a mom to 4 children. 3 of whom were triplets with some special needs.
<br />
<br />I also believe HollyCatheryn had sinus issues. Cant remember when she was diagnosed tho. She doesnt come on here often anymore, but she was a website & email that you can reach her....
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.geocities.com/MurrensNatureMama/
">http://www.geocities.com/MurrensNatureMama/
</a><br />
<br />Good Luck
<br />
<br />

 

[Juliet]

I too had chronic sinus issues. I had surgery for polyps a year ago which helped tremendously. This was all before I was DX with CF. The sinuses themselves didn't lead to me getting tested (genetically), it was my lung problems which did that. Actually before I had sinus surgery the docs were about 50/50 that I had sarcoidoisis. But no granulomas showed up in my sinus pathology after surgery which ruled that out for my sinuses.

Definitely look into the CF testing. They'll probably do a sweat test first. That's a simple test where they put a sensor on your arm for an hour, collect the sweat and look for the sodium-choloride levels (salt level in the sweat). If it's positive (above 60) then you have a definite DX of CF. There is a wide grey area (40-60). If it's below 40 generally they say no CF. However I've got CF and my sweat test results were 53, 47 and 40. The lower numbers being more recently when my CF is definitely more pronounced than when I was a teenager and tested with 53. So the point there is depending on the result you might still want them to do a genetic test (blood test) that actually looks for the genetic mutations. That's how I was finally DXd with CF. Good luck! ~Juliet

 

[Juliet]

I too had chronic sinus issues. I had surgery for polyps a year ago which helped tremendously. This was all before I was DX with CF. The sinuses themselves didn't lead to me getting tested (genetically), it was my lung problems which did that. Actually before I had sinus surgery the docs were about 50/50 that I had sarcoidoisis. But no granulomas showed up in my sinus pathology after surgery which ruled that out for my sinuses.

Definitely look into the CF testing. They'll probably do a sweat test first. That's a simple test where they put a sensor on your arm for an hour, collect the sweat and look for the sodium-choloride levels (salt level in the sweat). If it's positive (above 60) then you have a definite DX of CF. There is a wide grey area (40-60). If it's below 40 generally they say no CF. However I've got CF and my sweat test results were 53, 47 and 40. The lower numbers being more recently when my CF is definitely more pronounced than when I was a teenager and tested with 53. So the point there is depending on the result you might still want them to do a genetic test (blood test) that actually looks for the genetic mutations. That's how I was finally DXd with CF. Good luck! ~Juliet

 

[Juliet]

I too had chronic sinus issues. I had surgery for polyps a year ago which helped tremendously. This was all before I was DX with CF. The sinuses themselves didn't lead to me getting tested (genetically), it was my lung problems which did that. Actually before I had sinus surgery the docs were about 50/50 that I had sarcoidoisis. But no granulomas showed up in my sinus pathology after surgery which ruled that out for my sinuses.

Definitely look into the CF testing. They'll probably do a sweat test first. That's a simple test where they put a sensor on your arm for an hour, collect the sweat and look for the sodium-choloride levels (salt level in the sweat). If it's positive (above 60) then you have a definite DX of CF. There is a wide grey area (40-60). If it's below 40 generally they say no CF. However I've got CF and my sweat test results were 53, 47 and 40. The lower numbers being more recently when my CF is definitely more pronounced than when I was a teenager and tested with 53. So the point there is depending on the result you might still want them to do a genetic test (blood test) that actually looks for the genetic mutations. That's how I was finally DXd with CF. Good luck! ~Juliet

 

[Juliet]

I too had chronic sinus issues. I had surgery for polyps a year ago which helped tremendously. This was all before I was DX with CF. The sinuses themselves didn't lead to me getting tested (genetically), it was my lung problems which did that. Actually before I had sinus surgery the docs were about 50/50 that I had sarcoidoisis. But no granulomas showed up in my sinus pathology after surgery which ruled that out for my sinuses.

Definitely look into the CF testing. They'll probably do a sweat test first. That's a simple test where they put a sensor on your arm for an hour, collect the sweat and look for the sodium-choloride levels (salt level in the sweat). If it's positive (above 60) then you have a definite DX of CF. There is a wide grey area (40-60). If it's below 40 generally they say no CF. However I've got CF and my sweat test results were 53, 47 and 40. The lower numbers being more recently when my CF is definitely more pronounced than when I was a teenager and tested with 53. So the point there is depending on the result you might still want them to do a genetic test (blood test) that actually looks for the genetic mutations. That's how I was finally DXd with CF. Good luck! ~Juliet

 

[Juliet]

I too had chronic sinus issues. I had surgery for polyps a year ago which helped tremendously. This was all before I was DX with CF. The sinuses themselves didn't lead to me getting tested (genetically), it was my lung problems which did that. Actually before I had sinus surgery the docs were about 50/50 that I had sarcoidoisis. But no granulomas showed up in my sinus pathology after surgery which ruled that out for my sinuses.
<br />
<br />Definitely look into the CF testing. They'll probably do a sweat test first. That's a simple test where they put a sensor on your arm for an hour, collect the sweat and look for the sodium-choloride levels (salt level in the sweat). If it's positive (above 60) then you have a definite DX of CF. There is a wide grey area (40-60). If it's below 40 generally they say no CF. However I've got CF and my sweat test results were 53, 47 and 40. The lower numbers being more recently when my CF is definitely more pronounced than when I was a teenager and tested with 53. So the point there is depending on the result you might still want them to do a genetic test (blood test) that actually looks for the genetic mutations. That's how I was finally DXd with CF. Good luck! ~Juliet

 

[SandyCheeks]

Hi! I have a DD who is 10 and has gone through all you are describing. We also have had her ruled out for cilliary dyskenesia (sp?) The only thing that has been remarkable for her is her sweat chloride test, that came back 38- high normal.

We had genetic testing done and I didn't know enough to be sure all 1500 mutations were looked at and now we are fighting with our insurance company to have them cover the ambry panel.

So to answer your question, yes, it is possible. I don't think doctors are as used to seeing atypical or even symptomatic carriers so there is less urgency on their part to get them tested appropriately.

Good Luck and keep us posted.

sandy

 

[SandyCheeks]

Hi! I have a DD who is 10 and has gone through all you are describing. We also have had her ruled out for cilliary dyskenesia (sp?) The only thing that has been remarkable for her is her sweat chloride test, that came back 38- high normal.

We had genetic testing done and I didn't know enough to be sure all 1500 mutations were looked at and now we are fighting with our insurance company to have them cover the ambry panel.

So to answer your question, yes, it is possible. I don't think doctors are as used to seeing atypical or even symptomatic carriers so there is less urgency on their part to get them tested appropriately.

Good Luck and keep us posted.

sandy

 

[SandyCheeks]

Hi! I have a DD who is 10 and has gone through all you are describing. We also have had her ruled out for cilliary dyskenesia (sp?) The only thing that has been remarkable for her is her sweat chloride test, that came back 38- high normal.

We had genetic testing done and I didn't know enough to be sure all 1500 mutations were looked at and now we are fighting with our insurance company to have them cover the ambry panel.

So to answer your question, yes, it is possible. I don't think doctors are as used to seeing atypical or even symptomatic carriers so there is less urgency on their part to get them tested appropriately.

Good Luck and keep us posted.

sandy

 

[SandyCheeks]

Hi! I have a DD who is 10 and has gone through all you are describing. We also have had her ruled out for cilliary dyskenesia (sp?) The only thing that has been remarkable for her is her sweat chloride test, that came back 38- high normal.

We had genetic testing done and I didn't know enough to be sure all 1500 mutations were looked at and now we are fighting with our insurance company to have them cover the ambry panel.

So to answer your question, yes, it is possible. I don't think doctors are as used to seeing atypical or even symptomatic carriers so there is less urgency on their part to get them tested appropriately.

Good Luck and keep us posted.

sandy

 

[SandyCheeks]

Hi! I have a DD who is 10 and has gone through all you are describing. We also have had her ruled out for cilliary dyskenesia (sp?) The only thing that has been remarkable for her is her sweat chloride test, that came back 38- high normal.
<br />
<br />We had genetic testing done and I didn't know enough to be sure all 1500 mutations were looked at and now we are fighting with our insurance company to have them cover the ambry panel.
<br />
<br />So to answer your question, yes, it is possible. I don't think doctors are as used to seeing atypical or even symptomatic carriers so there is less urgency on their part to get them tested appropriately.
<br />
<br />Good Luck and keep us posted.
<br />
<br />sandy

 

[jerse0440]

Thanks for your replies ladies--my sons ENT is sending a RX for the sweat test. Juliet, was type of treatment do they give you since you have been diagnosed? What happens if they determine it is CF? What treatment approach is generally used?
Sandy, it sounds like you are kind of at the same spot we are at. I hope you are able to get the genetic testing that you need.
Thanks again, will hope for some new answers as we start the testing process.

 

[jerse0440]

Thanks for your replies ladies--my sons ENT is sending a RX for the sweat test. Juliet, was type of treatment do they give you since you have been diagnosed? What happens if they determine it is CF? What treatment approach is generally used?
Sandy, it sounds like you are kind of at the same spot we are at. I hope you are able to get the genetic testing that you need.
Thanks again, will hope for some new answers as we start the testing process.

 

[jerse0440]

Thanks for your replies ladies--my sons ENT is sending a RX for the sweat test. Juliet, was type of treatment do they give you since you have been diagnosed? What happens if they determine it is CF? What treatment approach is generally used?
Sandy, it sounds like you are kind of at the same spot we are at. I hope you are able to get the genetic testing that you need.
Thanks again, will hope for some new answers as we start the testing process.

 

[jerse0440]

Thanks for your replies ladies--my sons ENT is sending a RX for the sweat test. Juliet, was type of treatment do they give you since you have been diagnosed? What happens if they determine it is CF? What treatment approach is generally used?
Sandy, it sounds like you are kind of at the same spot we are at. I hope you are able to get the genetic testing that you need.
Thanks again, will hope for some new answers as we start the testing process.

 

[jerse0440]

Thanks for your replies ladies--my sons ENT is sending a RX for the sweat test. Juliet, was type of treatment do they give you since you have been diagnosed? What happens if they determine it is CF? What treatment approach is generally used?
<br />Sandy, it sounds like you are kind of at the same spot we are at. I hope you are able to get the genetic testing that you need.
<br />Thanks again, will hope for some new answers as we start the testing process.