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Sorry I don't mean to pry. I am just so very interested on how some of you taking it off label are doing. Whether good or bad. I know that some of you have been on it for a while now and just wondering how you are feeling. We still have not got to find out Abby's second mutation. I'm on pins and...

Sorry I don't mean to pry. I am just so very interested on how some of you taking it off label are doing. Whether good or bad. I know that some of you have been on it for a while now and just wondering how you are feeling. We still have not got to find out Abby's second mutation. I'm on pins and...

Hi Kristen, We have 2 children and like you would not trade them for the world!!! Our oldest does not have CF. There is a chance that your second would be perfectly fine. Not only that, these are amazing times!! Within the next couple of years I truely believe that our lifestyle with CF that...

Hi Kristen, We have 2 children and like you would not trade them for the world!!! Our oldest does not have CF. There is a chance that your second would be perfectly fine. Not only that, these are amazing times!! Within the next couple of years I truely believe that our lifestyle with CF that...

Wow please do keep us posted!! Abby has MRSA for the last 4 years as well. That would be wonderful to get rid of!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Wow please do keep us posted!! Abby has MRSA for the last 4 years as well. That would be wonderful to get rid of!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Bless your heart!! I pray you can get this medication for your daughter. I would be doing the same thing if I were in your shoes. You are a good mom!! I wish I had info for you but I live in Texas. I just wanted to say good luck and I applaud you!!! Praying for your daughter!!!

Bless your heart!! I pray you can get this medication for your daughter. I would be doing the same thing if I were in your shoes. You are a good mom!! I wish I had info for you but I live in Texas. I just wanted to say good luck and I applaud you!!! Praying for your daughter!!!

Daisy85 Steven on the Family forum under Welcome Ambry Genetics will look that up for you and let you know exactly what test was ran and if anything further needs to be ran. Check it out. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Daisy85 Steven on the Family forum under Welcome Ambry Genetics will look that up for you and let you know exactly what test was ran and if anything further needs to be ran. Check it out. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Wow that's amazing!! Soooo happy for you!!! Thanks for letting us know. Hope your PFT's keep going up! How are you feeling other than increase in PFT's?

Wow that's amazing!! Soooo happy for you!!! Thanks for letting us know. Hope your PFT's keep going up! How are you feeling other than increase in PFT's?

This sounds like a good question for Steven. Look for the forum titled Welcome Ambry Genetics. He is very good at answering questions like this. Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

This sounds like a good question for Steven. Look for the forum titled Welcome Ambry Genetics. He is very good at answering questions like this. Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

I would question which genetics test she had. If she just had a small panel test done, I think I would push to get the full genetics test done. If you look there is a forum started for Welcome Ambry Genetics and I think Steven would be able to help you with this. He is very good. If I were...

I would question which genetics test she had. If she just had a small panel test done, I think I would push to get the full genetics test done. If you look there is a forum started for Welcome Ambry Genetics and I think Steven would be able to help you with this. He is very good. If I were...

They usually just do a throat culture to see if it is gone. But usually I can pretty much tell because she quits coughing. And we have always cultured those 2 together for some reason, never just one or the other. Abby is very very active and generally does not cough unless she is sick. I'm...

They usually just do a throat culture to see if it is gone. But usually I can pretty much tell because she quits coughing. And we have always cultured those 2 together for some reason, never just one or the other. Abby is very very active and generally does not cough unless she is sick. I'm...

They usually just do a throat culture to see if it is gone. But usually I can pretty much tell because she quits coughing. And we have always cultured those 2 together for some reason, never just one or the other. Abby is very very active and generally does not cough unless she is sick. I'm...

They usually just do a throat culture to see if it is gone. But usually I can pretty much tell because she quits coughing. And we have always cultured those 2 together for some reason, never just one or the other. Abby is very very active and generally does not cough unless she is sick. I'm...