Does this sound like CF?

[bmombtoo]

Hi,
My son made it to <span class="FTHighlightFont">age 12 </span ft>without being diagnosed. We just got our <span class="FTHighlightFont">official "it's CF" in September</span ft>. He has had prolbems with asthma and sinus infections all of his life. He too vomits muscus.

As far as genetic testing goes they did it my drawing blood from Josh. However they were <span class="FTHighlightFont">unable to identify a single gene mutation.</span ft> He still has CF, the gene has not been identified yet and his doctor states she knows of about 10 families across the US where this is the case.

Additionally he <span class="FTHighlightFont">sweat test results varied from questionasble to no cf. </span ft>However the doctors did a test called a <span class="FTHighlightFont">nasal differential potential</span ft>, recognized as a test for CF, and <span class="FTHighlightFont">that was positive</span ft>. There is also a "special sweat test" that is different form the routine one and that one was positive for CF.

We are African American and because of ethnic background, the presentation of CF is somewhat different and not as frequent.

 

[bmombtoo]

Hi,
My son made it to <span class="FTHighlightFont">age 12 </span ft>without being diagnosed. We just got our <span class="FTHighlightFont">official "it's CF" in September</span ft>. He has had prolbems with asthma and sinus infections all of his life. He too vomits muscus.

As far as genetic testing goes they did it my drawing blood from Josh. However they were <span class="FTHighlightFont">unable to identify a single gene mutation.</span ft> He still has CF, the gene has not been identified yet and his doctor states she knows of about 10 families across the US where this is the case.

Additionally he <span class="FTHighlightFont">sweat test results varied from questionasble to no cf. </span ft>However the doctors did a test called a <span class="FTHighlightFont">nasal differential potential</span ft>, recognized as a test for CF, and <span class="FTHighlightFont">that was positive</span ft>. There is also a "special sweat test" that is different form the routine one and that one was positive for CF.

We are African American and because of ethnic background, the presentation of CF is somewhat different and not as frequent.

 

[2roses]

I'm new to this site and a mom of 2 girls with CF. As I skimmed the string of messages, I think you're wise to press ahead with gene testing ASAP. Really, don't wait. Did your pulmonologist suggest screening for reflux, too, which can cause the same symptoms you describe and is a common, treatable ailment? My daughters have that, too. I'd look into that, too---maybe it's not CF!! Wouldn't that be great. If it is, you'll need support from other moms, so let us know how it goes.

 

[2roses]

I'm new to this site and a mom of 2 girls with CF. As I skimmed the string of messages, I think you're wise to press ahead with gene testing ASAP. Really, don't wait. Did your pulmonologist suggest screening for reflux, too, which can cause the same symptoms you describe and is a common, treatable ailment? My daughters have that, too. I'd look into that, too---maybe it's not CF!! Wouldn't that be great. If it is, you'll need support from other moms, so let us know how it goes.

 

[2roses]

I'm new to this site and a mom of 2 girls with CF. As I skimmed the string of messages, I think you're wise to press ahead with gene testing ASAP. Really, don't wait. Did your pulmonologist suggest screening for reflux, too, which can cause the same symptoms you describe and is a common, treatable ailment? My daughters have that, too. I'd look into that, too---maybe it's not CF!! Wouldn't that be great. If it is, you'll need support from other moms, so let us know how it goes.

 

[mom4holly]

Unfortanately they have ruled out reflux which they also decided to treat her for prior to ruling it out and not only did it put a nice big whole in my pocket but did not help at all. It would be great if she did not have it but at the same time she has suffered through so many things and "guestimated" treatment that me and my dr are at a loss and I just really need some answers. I am so frustrated and scared and my insurance is so demanding that I am at a loss as to where i can turn. Thanks for everyones help!!!

 

[mom4holly]

Unfortanately they have ruled out reflux which they also decided to treat her for prior to ruling it out and not only did it put a nice big whole in my pocket but did not help at all. It would be great if she did not have it but at the same time she has suffered through so many things and "guestimated" treatment that me and my dr are at a loss and I just really need some answers. I am so frustrated and scared and my insurance is so demanding that I am at a loss as to where i can turn. Thanks for everyones help!!!

 

[mom4holly]

Unfortanately they have ruled out reflux which they also decided to treat her for prior to ruling it out and not only did it put a nice big whole in my pocket but did not help at all. It would be great if she did not have it but at the same time she has suffered through so many things and "guestimated" treatment that me and my dr are at a loss and I just really need some answers. I am so frustrated and scared and my insurance is so demanding that I am at a loss as to where i can turn. Thanks for everyones help!!!