Recent content by concerneddad

I think the phase 3 also requires that the other mutation be f508del, which, unfortunately, is not the other mutation for my daughter (it is w1282x). Also, anyone who has one of the mutations that is on the list for sure should be jumping up and down and I am definitely happy for all of them...

residual function and Vertex I actually wrote a letter to Vertex yesterday asking them why they did not include all residual function mutations in the sNDA. My daughter has a Class V residual function mutation that's not included in the golden list of 23 (the characteristic of her mutation is...

Interesting information. My children have one residual function mutation and I too have been waiting the outcome of this study. I was not aware that the residual function study was "suspended" and wrapped in with the larger study involving 661. The press release issued following the proof of...

Joetrivium, Your story sounds very similar to that of my mother-in-law who was diagnosed last year at the age of 73 (after having had many of the same problems you note for much of her life). She was finally tested for CF after my daughter (her granddaughter) was diagnosed last year at age 16...

q1291h (not 1281). Sorry, typing on an iPhone is a challenge (should have kept my blackberry). My mother in law has had sinus problems all of her life and a pronounced cough for the last 20 plus years (before treatment). She has bronchiectasis, pseudomonas and aspergillis (and maybe some...

Kevin A Thanks for the info. Your story is quite interesting. Since my daughter was diagnosed, we found out that my mother in law has cf as well, diagnosed at age 73 with q1291h and f508del. She is the oldest to be diagnosed at her cf center. Also, unfortunately, my son (19) had a bout of...

Thanks all for the additional responses. My daughter alternates between the 3% and 7% saline, but prefers the 3% for now since it apparently is easier to tolerate (she has only been doing it for about 7 weeks total). I think (hope) she will work her way up to 7%. I know of Cayston, but is has...

Thanks all for the additional responses. My daughter alternates between the 3% and 7% saline, but prefers the 3% for now since it apparently is easier to tolerate (she has only been doing it for about 7 weeks total). I think (hope) she will work her way up to 7%. I know of Cayston, but is has...

Thanks for all of the responses thus far. At this point, I did get the doctor to prescribe another round of Cipro along with the TOBI (on the basis that the Cipro really cant hurt and she can tolerate it pretty well based on her first round). I am hopeful that it will work. When my daughter...

Thanks for all of the responses thus far. At this point, I did get the doctor to prescribe another round of Cipro along with the TOBI (on the basis that the Cipro really cant hurt and she can tolerate it pretty well based on her first round). I am hopeful that it will work. When my daughter...

My almost 17 year old daughter was diagnosed with CF in late February of this year and cultured pseudomonas. A little history, prior to her diagnosis, she always had an off and on cough and was a little sicker than her friends and siblings, but nothing too out of the ordinary. Nonetheless, she...

My almost 17 year old daughter was diagnosed with CF in late February of this year and cultured pseudomonas. A little history, prior to her diagnosis, she always had an off and on cough and was a little sicker than her friends and siblings, but nothing too out of the ordinary. Nonetheless, she...

We confirmed today that the second mutation is q1291H (not N). Still not a lot of information about it but at least we know this much. Thanks again.

We confirmed today that the second mutation is q1291H (not N). Still not a lot of information about it but at least we know this much. Thanks again.

Heather: Thanks so much for your quick response. I am going to call the doctor tomorrow to both confirm the second mutation and request a copy of the report. We are scheduled to meet with the doctor and geneticist next week. As you say, we are just trying to get as much information as...