Told not to worry but I am

[curiousmom1]

My daughter has had chronic sinusitis since birth. She cultures bacteria infections and is always on an antibiotic after ruling out Cf with a normal sweat test we stopped worrying about it till we were told we have to do a gene test because she could have atypical CF. We did the gene test and we were told she has A 5t variant and a 7t variant
but that it wasnt associated with CF not to worry. I am worried though and wanted to know if anyone on this site has any info. Thanks in advance. My daughter is 8 and also has celaic and type 1 diabetes. Tested negative for PCD also.

 

[curiousmom1]

My daughter has had chronic sinusitis since birth. She cultures bacteria infections and is always on an antibiotic after ruling out Cf with a normal sweat test we stopped worrying about it till we were told we have to do a gene test because she could have atypical CF. We did the gene test and we were told she has A 5t variant and a 7t variant
but that it wasnt associated with CF not to worry. I am worried though and wanted to know if anyone on this site has any info. Thanks in advance. My daughter is 8 and also has celaic and type 1 diabetes. Tested negative for PCD also.

 

[curiousmom1]

My daughter has had chronic sinusitis since birth. She cultures bacteria infections and is always on an antibiotic after ruling out Cf with a normal sweat test we stopped worrying about it till we were told we have to do a gene test because she could have atypical CF. We did the gene test and we were told she has A 5t variant and a 7t variant
<br />but that it wasnt associated with CF not to worry. I am worried though and wanted to know if anyone on this site has any info. Thanks in advance. My daughter is 8 and also has celaic and type 1 diabetes. Tested negative for PCD also.

 

[Mommafirst]

Oh my gosh, I'm so sorry, your sweet daughter has enough on her plate. I hope you don't add CF to that. What a genetic lottery, huh?

I really know very little about the variants. I know that one of those may be disease causing when combined with a mutation, but that's about the extent of my knowledge. It would be totally irresponsible of me to try and explain it to you. I'd suggest going onto the AMBRY discussion post (under families). Steven Kiels is a geneticist with Ambry and comes and answers these types of questions. Maybe he can explain why you should or shouldn't be worried.

Best of luck!!!

 

[Mommafirst]

Oh my gosh, I'm so sorry, your sweet daughter has enough on her plate. I hope you don't add CF to that. What a genetic lottery, huh?

I really know very little about the variants. I know that one of those may be disease causing when combined with a mutation, but that's about the extent of my knowledge. It would be totally irresponsible of me to try and explain it to you. I'd suggest going onto the AMBRY discussion post (under families). Steven Kiels is a geneticist with Ambry and comes and answers these types of questions. Maybe he can explain why you should or shouldn't be worried.

Best of luck!!!

 

[Mommafirst]

Oh my gosh, I'm so sorry, your sweet daughter has enough on her plate. I hope you don't add CF to that. What a genetic lottery, huh?
<br />
<br />I really know very little about the variants. I know that one of those may be disease causing when combined with a mutation, but that's about the extent of my knowledge. It would be totally irresponsible of me to try and explain it to you. I'd suggest going onto the AMBRY discussion post (under families). Steven Kiels is a geneticist with Ambry and comes and answers these types of questions. Maybe he can explain why you should or shouldn't be worried.
<br />
<br />Best of luck!!!

 

[traxster]

<a target=_blank class=ftalternatingbarlinklarge href="http://www.unc.edu/news/archives/aug97/friedman.html
">http://www.unc.edu/news/archives/aug97/friedman.html
</a>
My son also has the 5T variant but we are waiting to see if he has another variant. At that point, I guess we will get an official diagnosis. The link above describes some of the research that was done to make the association between 5T when it is associated with another CF mutation. We are waiting. I will let you know what happens.

My son has also had chronic sinusitis, adenoids removed and has been on antibiotics as long as I can remember. Other than having lots of mucous in his lungs that has started in early March, and growing pseudomonas and achromabacter recently, he doesn't really have any other symptoms, like the digestive issues that are common.

 

[traxster]

<a target=_blank class=ftalternatingbarlinklarge href="http://www.unc.edu/news/archives/aug97/friedman.html
">http://www.unc.edu/news/archives/aug97/friedman.html
</a>
My son also has the 5T variant but we are waiting to see if he has another variant. At that point, I guess we will get an official diagnosis. The link above describes some of the research that was done to make the association between 5T when it is associated with another CF mutation. We are waiting. I will let you know what happens.

My son has also had chronic sinusitis, adenoids removed and has been on antibiotics as long as I can remember. Other than having lots of mucous in his lungs that has started in early March, and growing pseudomonas and achromabacter recently, he doesn't really have any other symptoms, like the digestive issues that are common.

 

[traxster]

<a target=_blank class=ftalternatingbarlinklarge href="http://www.unc.edu/news/archives/aug97/friedman.html
">http://www.unc.edu/news/archives/aug97/friedman.html
</a><br />
<br />My son also has the 5T variant but we are waiting to see if he has another variant. At that point, I guess we will get an official diagnosis. The link above describes some of the research that was done to make the association between 5T when it is associated with another CF mutation. We are waiting. I will let you know what happens.
<br />
<br />My son has also had chronic sinusitis, adenoids removed and has been on antibiotics as long as I can remember. Other than having lots of mucous in his lungs that has started in early March, and growing pseudomonas and achromabacter recently, he doesn't really have any other symptoms, like the digestive issues that are common.