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I am so sorry you were introduced to CF in this manner. Shame on the doc for giving you her opinion like that and then not much else to educate/inform you. <br /> <br />Our very well-respected pediatrician also told us he was dumbfounded, and that our daughter "didn't look like she had CF" once...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i> Did you take 28 days off between rounds of TOBI or did you do 3 months of TOBI in a row?</end quote></div> At DD's first culture, yes we were on TOBI 3 months in a row along with a long course of Cipro. Then we went...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i> Did you take 28 days off between rounds of TOBI or did you do 3 months of TOBI in a row?</end quote> At DD's first culture, yes we were on TOBI 3 months in a row along with a long course of Cipro. Then we went to...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i> <br /> <br />Did you take 28 days off between rounds of TOBI or did you do 3 months of TOBI in a row?</end quote> <br /> <br />At DD's first culture, yes we were on TOBI 3 months in a row along with a long course of...

Yes, it was a really sad experience for me when DD cultured it for the first time so I know how you feel and I'm really sorry. TOBI takes us about 18 minutes to neb and it is 2x per day. It comes in vials just like Pulmozyme or HyperSal and it needs to be refrigerated. As far as explaining it...

Yes, it was a really sad experience for me when DD cultured it for the first time so I know how you feel and I'm really sorry. TOBI takes us about 18 minutes to neb and it is 2x per day. It comes in vials just like Pulmozyme or HyperSal and it needs to be refrigerated. As far as explaining it...

Yes, it was a really sad experience for me when DD cultured it for the first time so I know how you feel and I'm really sorry. <br /> <br />TOBI takes us about 18 minutes to neb and it is 2x per day. It comes in vials just like Pulmozyme or HyperSal and it needs to be refrigerated. <br /> <br...

I am surprised at how saddened I have been by this news. It's not at all about the extra effort that DD and the family have been through to test the drug - we've had some definite benefits from participating in the trial. My sadness is at the loss of this drug's promise: to do an end-around...

I am surprised at how saddened I have been by this news. It's not at all about the extra effort that DD and the family have been through to test the drug - we've had some definite benefits from participating in the trial. My sadness is at the loss of this drug's promise: to do an end-around...

I am surprised at how saddened I have been by this news. It's not at all about the extra effort that DD and the family have been through to test the drug - we've had some definite benefits from participating in the trial. <br /> <br />My sadness is at the loss of this drug's promise: to do an...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i> Dana, I want to thank you and your daughter for participating in the clinical trial process for so long (and your dd for hanging in there through so much testing despite disliking it so much!) It's so important and the...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i> Dana, I want to thank you and your daughter for participating in the clinical trial process for so long (and your dd for hanging in there through so much testing despite disliking it so much!) It's so important and the...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i> <br /> <br />Dana, I want to thank you and your daughter for participating in the clinical trial process for so long (and your dd for hanging in there through so much testing despite disliking it so much!) It's so...

Heterozygous DF508 means one of the defective genes is DF508 and the other gene is to be identified, as you said. Our daughter is homozygous for DF508 - both of her CFTR genes are DF508. DF508 is a Class II mutation. Although <i>mutations do not necessarily correlate to clinical outcome</i>...

Heterozygous DF508 means one of the defective genes is DF508 and the other gene is to be identified, as you said. Our daughter is homozygous for DF508 - both of her CFTR genes are DF508. DF508 is a Class II mutation. Although <i>mutations do not necessarily correlate to clinical outcome</i>...

Heterozygous DF508 means one of the defective genes is DF508 and the other gene is to be identified, as you said. <br /> <br />Our daughter is homozygous for DF508 - both of her CFTR genes are DF508. <br /> <br />DF508 is a Class II mutation. Although <i>mutations do not necessarily correlate...

Cr*p....we were in TIGER-2 for 48 weeks (drug vs placebo) and we are on the second year of the open label extension. All of that extra testing (which she totally hated) on my kiddo for nothing, I guess. <img src="i/expressions/face-icon-small-sad.gif" border="0"> She has been clincally stable...

Cr*p....we were in TIGER-2 for 48 weeks (drug vs placebo) and we are on the second year of the open label extension. All of that extra testing (which she totally hated) on my kiddo for nothing, I guess. <img src="i/expressions/face-icon-small-sad.gif" border="0"> She has been clincally stable...

Cr*p....we were in TIGER-2 for 48 weeks (drug vs placebo) and we are on the second year of the open label extension. All of that extra testing (which she totally hated) on my kiddo for nothing, I guess. <img src="i/expressions/face-icon-small-sad.gif" border="0"> <br /> <br />She has been...

If anyone is still reading this thread, please note: The Ambry test to order if you only wanted to screen for carrier status of the DF508 mutation would actually be "508 <i><b>Only</b></i>" because with their "508 First" test, if a carrier is negative for DF508, Ambry would automatically...