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Thanks for all the information everyone! I guess I'm not the only one who is eagering awaiting this drug. My daughter is only 17 months, so a lot of this is new to me, but if I understand everything correctly, is this med. kind of like a cure? I mean, I know she will have to continue to take...

Thanks for all the information everyone! I guess I'm not the only one who is eagering awaiting this drug. My daughter is only 17 months, so a lot of this is new to me, but if I understand everything correctly, is this med. kind of like a cure? I mean, I know she will have to continue to take...

Thanks for all the information everyone! I guess I'm not the only one who is eagering awaiting this drug. My daughter is only 17 months, so a lot of this is new to me, but if I understand everything correctly, is this med. kind of like a cure? I mean, I know she will have to continue to take...

Hello! I was curious if any of you, or your children are trying the phase II drug PTC124? It sure sounds promising for those with a nonsense mutation and I can't find anything online about how the actual trial is going. My daugter has the delta f508, but she also has Y1092x which is so rare...

Hello! I was curious if any of you, or your children are trying the phase II drug PTC124? It sure sounds promising for those with a nonsense mutation and I can't find anything online about how the actual trial is going. My daugter has the delta f508, but she also has Y1092x which is so rare...

Hello! I was curious if any of you, or your children are trying the phase II drug PTC124? It sure sounds promising for those with a nonsense mutation and I can't find anything online about how the actual trial is going. My daugter has the delta f508, but she also has Y1092x which is so rare...

My daughter also cultured PA at about 6 months. They also told us it was not too much and just a few. We admitted her for two weeks doing IV Tobi and Cipro, then they continued two weeks at home. It has been ten months since then, and we have had four clean cultures since! So the fact they...

My daughter also cultured PA at about 6 months. They also told us it was not too much and just a few. We admitted her for two weeks doing IV Tobi and Cipro, then they continued two weeks at home. It has been ten months since then, and we have had four clean cultures since! So the fact they...

My daughter also cultured PA at about 6 months. They also told us it was not too much and just a few. We admitted her for two weeks doing IV Tobi and Cipro, then they continued two weeks at home. It has been ten months since then, and we have had four clean cultures since! So the fact they...

Hi all, My daughter has had a cold with the green nose gunk, and a slight fever so the dr. put her on a month of TOBI. We won't have her throat culture back until Tues. so I am hoping the PA is not back and the dr. is just being overly cautious..... Anyway, she has had about 3 doses so far...

Hi all, My daughter has had a cold with the green nose gunk, and a slight fever so the dr. put her on a month of TOBI. We won't have her throat culture back until Tues. so I am hoping the PA is not back and the dr. is just being overly cautious..... Anyway, she has had about 3 doses so far...

Hi all, My daughter has had a cold with the green nose gunk, and a slight fever so the dr. put her on a month of TOBI. We won't have her throat culture back until Tues. so I am hoping the PA is not back and the dr. is just being overly cautious..... Anyway, she has had about 3 doses so far...

Hello all, My daughter was admitted last spring for PA. THey did eradicate it and she has had 3 clean cultures since. YAY! Anyway, they couldn't get in a PICC at the time, said her veins were too small (she was 6 months at the time.) I guess my question is, I know it will happen again when...

Hello all, My daughter was admitted last spring for PA. THey did eradicate it and she has had 3 clean cultures since. YAY! Anyway, they couldn't get in a PICC at the time, said her veins were too small (she was 6 months at the time.) I guess my question is, I know it will happen again when...

Hello all, My daughter was admitted last spring for PA. THey did eradicate it and she has had 3 clean cultures since. YAY! Anyway, they couldn't get in a PICC at the time, said her veins were too small (she was 6 months at the time.) I guess my question is, I know it will happen again when...

My daughter wouldn't drink the Pediasure either. We tried, and we started to notice a pattern that she was throwing it up all the time. Now I want to gag when I smell vanilla! <img src="i/expressions/face-icon-small-smile.gif" border="0"> OUr clinic said they would rather she eat something...

My daughter wouldn't drink the Pediasure either. We tried, and we started to notice a pattern that she was throwing it up all the time. Now I want to gag when I smell vanilla! <img src="i/expressions/face-icon-small-smile.gif" border="0"> OUr clinic said they would rather she eat something...

My daughter wouldn't drink the Pediasure either. We tried, and we started to notice a pattern that she was throwing it up all the time. Now I want to gag when I smell vanilla! <img src="i/expressions/face-icon-small-smile.gif" border="0"> OUr clinic said they would rather she eat something...

I was on the CFF drug pipeline page and I was curious if anyone knows anything, or is trying this drug in phase II right now. If I understand it, it sounds like it would really help those with nonsense mutations (which is what my daughter has). I was curious if anyone knew anything about it...

I was on the CFF drug pipeline page and I was curious if anyone knows anything, or is trying this drug in phase II right now. If I understand it, it sounds like it would really help those with nonsense mutations (which is what my daughter has). I was curious if anyone knew anything about it...