Deletions and duplications

K

Koleen

New member
Wow reading your story I understand how you feel. My daughter who is now four was diagnosed in what he called (this is the doc now) in his opinion she has Atypical CF. Why? Just like you no supporting testing. They have been unable to find any mutations, GI is fine, One postv. sweat test at 66 one at 49... CT scan of the lungs they look great. She has been culutred a few times all tersting came back good. I understand how you feel. First in understanding diagnosing of CF you must have either two postv. sweat test with systoms of course, or mutations being found. Sure there is alot more to this but those are the gold standards from what I have read.
Keep us posted. Or you can e-mail me also.
koleenmiller1@hotmail.com
 
K

Koleen

New member
Wow reading your story I understand how you feel. My daughter who is now four was diagnosed in what he called (this is the doc now) in his opinion she has Atypical CF. Why? Just like you no supporting testing. They have been unable to find any mutations, GI is fine, One postv. sweat test at 66 one at 49... CT scan of the lungs they look great. She has been culutred a few times all tersting came back good. I understand how you feel. First in understanding diagnosing of CF you must have either two postv. sweat test with systoms of course, or mutations being found. Sure there is alot more to this but those are the gold standards from what I have read.
Keep us posted. Or you can e-mail me also.
koleenmiller1@hotmail.com
 
K

Koleen

New member
Wow reading your story I understand how you feel. My daughter who is now four was diagnosed in what he called (this is the doc now) in his opinion she has Atypical CF. Why? Just like you no supporting testing. They have been unable to find any mutations, GI is fine, One postv. sweat test at 66 one at 49... CT scan of the lungs they look great. She has been culutred a few times all tersting came back good. I understand how you feel. First in understanding diagnosing of CF you must have either two postv. sweat test with systoms of course, or mutations being found. Sure there is alot more to this but those are the gold standards from what I have read.
Keep us posted. Or you can e-mail me also.
koleenmiller1@hotmail.com
 
K

Koleen

New member
Wow reading your story I understand how you feel. My daughter who is now four was diagnosed in what he called (this is the doc now) in his opinion she has Atypical CF. Why? Just like you no supporting testing. They have been unable to find any mutations, GI is fine, One postv. sweat test at 66 one at 49... CT scan of the lungs they look great. She has been culutred a few times all tersting came back good. I understand how you feel. First in understanding diagnosing of CF you must have either two postv. sweat test with systoms of course, or mutations being found. Sure there is alot more to this but those are the gold standards from what I have read.
Keep us posted. Or you can e-mail me also.
koleenmiller1@hotmail.com
 
K

Koleen

New member
Wow reading your story I understand how you feel. My daughter who is now four was diagnosed in what he called (this is the doc now) in his opinion she has Atypical CF. Why? Just like you no supporting testing. They have been unable to find any mutations, GI is fine, One postv. sweat test at 66 one at 49... CT scan of the lungs they look great. She has been culutred a few times all tersting came back good. I understand how you feel. First in understanding diagnosing of CF you must have either two postv. sweat test with systoms of course, or mutations being found. Sure there is alot more to this but those are the gold standards from what I have read.
<br />Keep us posted. Or you can e-mail me also.
<br />koleenmiller1@hotmail.com
 
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