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How has your CF progressed over the years?

M

momofsinus

Guest
<P>Hi - It's been awhile since I have posted. I joined this forum when my son was</P>
<P>having recurrent sinus infections and a teaching hospital in Chicago recommended testing for CF. He had the full Ambry panel in 2008 and they only found one gene. He was able to get the sinus issues under control with monthly cleanings from his ENT. In April 2010, he thought he was getting another sinus infection, ENT thought it was acid reflux because my son was losing his voice too. The doc did prescribe antibiotic as well as diet change and it cleared up. Jan 2011, my son thought he had a cold. After 3 weeks,went to ENT and was told he had lung infection. It cleared with 1 round of antibiotics. Now Dec 2011, coughing up lots of stuff, losing voice, going to pulmonologist soon. Does anyone think this is CF or just more symptoms???</P>
<P>Thanks for any perspectives on this!!</P>
 
M

momofsinus

Guest
<P>Hi - It's been awhile since I have posted. I joined this forum when my son was</P>
<P>having recurrent sinus infections and a teaching hospital in Chicago recommended testing for CF. He had the full Ambry panel in 2008 and they only found one gene. He was able to get the sinus issues under control with monthly cleanings from his ENT. In April 2010, he thought he was getting another sinus infection, ENT thought it was acid reflux because my son was losing his voice too. The doc did prescribe antibiotic as well as diet change and it cleared up. Jan 2011, my son thought he had a cold. After 3 weeks,went to ENT and was told he had lung infection. It cleared with 1 round of antibiotics. Now Dec 2011, coughing up lots of stuff, losing voice, going to pulmonologist soon. Does anyone think this is CF or just more symptoms???</P>
<P>Thanks for any perspectives on this!!</P>
 
P

Printer

Active member
I was dx in 1987 and the gene was identifyed in 1989. When I was first tested, in 1995, there were 250 known (identified) mutations. Today there are almost 1900 known mutations. Tomorrow there may be more. I'm guessing that there were mutations found between 2008 and today. Sinus issues, acid reflux, coughing up "stuff". My guess is that he has CF or at least, should be treated for CF. Go to an APPROVED CF CENTER, not just a hospital that has a CF Center, and see a CF Doctor. Son may already have permanent lung damage and you should not lose any more time. Call the CF Center today. Good luck, Bill
 
P

Printer

Active member
I was dx in 1987 and the gene was identifyed in 1989. When I was first tested, in 1995, there were 250 known (identified) mutations. Today there are almost 1900 known mutations. Tomorrow there may be more. I'm guessing that there were mutations found between 2008 and today. Sinus issues, acid reflux, coughing up "stuff". My guess is that he has CF or at least, should be treated for CF. Go to an APPROVED CF CENTER, not just a hospital that has a CF Center, and see a CF Doctor. Son may already have permanent lung damage and you should not lose any more time. Call the CF Center today. Good luck, Bill
 
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