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First, thanks to all of you who responded! Edna, how funny that we both have 4 year old Lee-las! Yes, we say ours the same way. She'll be five this July. It's a family name for us. We haven't met any others. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Maci's mom -...

First, thanks to all of you who responded! Edna, how funny that we both have 4 year old Lee-las! Yes, we say ours the same way. She'll be five this July. It's a family name for us. We haven't met any others. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Maci's mom -...

I see from a quick search that the swimming topic has been posted before, but I don't see a post specifically addressing the salt water swimming pools that seem to be so popular here in Florida. I'm curious to know if any of you have them, swim in them, etc. We were told by the docs in our CF...

I see from a quick search that the swimming topic has been posted before, but I don't see a post specifically addressing the salt water swimming pools that seem to be so popular here in Florida. I'm curious to know if any of you have them, swim in them, etc. We were told by the docs in our CF...

I see from a quick search that the swimming topic has been posted before, but I don't see a post specifically addressing the salt water swimming pools that seem to be so popular here in Florida. I'm curious to know if any of you have them, swim in them, etc. We were told by the docs in our CF...

Hi all! I just heard Lindsey's sweet voice a few minutes ago. She's starting to feel better and is excited to be going home on IV's this Friday. The respiratory therapists haven't been great, though. They refused giving CPT when she asked for it because the order was written for every 6...

Hi all! I just heard Lindsey's sweet voice a few minutes ago. She's starting to feel better and is excited to be going home on IV's this Friday. The respiratory therapists haven't been great, though. They refused giving CPT when she asked for it because the order was written for every 6...

Hi all! I just heard Lindsey's sweet voice a few minutes ago. She's starting to feel better and is excited to be going home on IV's this Friday. The respiratory therapists haven't been great, though. They refused giving CPT when she asked for it because the order was written for every 6...

Hi Zoe, We are watching the trials closely too. In the current Phase II study you must be at least 12 years to participate. Another Phase II study is being planned to include children as young as 6 years. PTC 124 is made by PTC therapeutics. You can read more about it on their website...

Hi Zoe, We are watching the trials closely too. In the current Phase II study you must be at least 12 years to participate. Another Phase II study is being planned to include children as young as 6 years. PTC 124 is made by PTC therapeutics. You can read more about it on their website...

Hi Zoe, We are watching the trials closely too. In the current Phase II study you must be at least 12 years to participate. Another Phase II study is being planned to include children as young as 6 years. PTC 124 is made by PTC therapeutics. You can read more about it on their website...

Uli, Leila does not receive Prolastin because of her age. It doesn't treat the liver disease and according to her docs we shouldn't see lung problems from the A1AT until she is older. She is the most severe form, PiZZ, so I imagine that we'll use it eventually. I'm not really sure at...

Uli, Leila does not receive Prolastin because of her age. It doesn't treat the liver disease and according to her docs we shouldn't see lung problems from the A1AT until she is older. She is the most severe form, PiZZ, so I imagine that we'll use it eventually. I'm not really sure at...

Uli, Leila does not receive Prolastin because of her age. It doesn't treat the liver disease and according to her docs we shouldn't see lung problems from the A1AT until she is older. She is the most severe form, PiZZ, so I imagine that we'll use it eventually. I'm not really sure at...

Hi Uli, Yep, we've been tested for that and our daughter also has alpha-1 antitrypsin deficiency. Very unlucky indeed. Our clinic said she was a one in a million! Our GI doc thinks her liver problems are more CF related because of the way the biopsy appears, but you can't ever be sure...

Hi Uli, Yep, we've been tested for that and our daughter also has alpha-1 antitrypsin deficiency. Very unlucky indeed. Our clinic said she was a one in a million! Our GI doc thinks her liver problems are more CF related because of the way the biopsy appears, but you can't ever be sure...

Hi Uli, Yep, we've been tested for that and our daughter also has alpha-1 antitrypsin deficiency. Very unlucky indeed. Our clinic said she was a one in a million! Our GI doc thinks her liver problems are more CF related because of the way the biopsy appears, but you can't ever be sure...

Hey Blue, I'm with you on this issue. I wish there was more to do, too. Our daughter presented with liver issues at 2 months of age. She was terribly jaundiced. Her acute liver disease resolved with ursodiol (which she takes twice daily for the rest of her current liver's life) and...

Hey Blue, I'm with you on this issue. I wish there was more to do, too. Our daughter presented with liver issues at 2 months of age. She was terribly jaundiced. Her acute liver disease resolved with ursodiol (which she takes twice daily for the rest of her current liver's life) and...

Hey Blue, I'm with you on this issue. I wish there was more to do, too. Our daughter presented with liver issues at 2 months of age. She was terribly jaundiced. Her acute liver disease resolved with ursodiol (which she takes twice daily for the rest of her current liver's life) and...