Cystic Fibrosis Forum (EXP)

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  1. G

    Positive sweat test and now maybe not CF?

    No I dont mind - we started at St Louis Childrens Hospital and I am sure they have a great rep but it just wasnt for us. My daughter in law hated not being able to speak to someone when she needed to - etc. So now we go to Childrens Mercy in KC and love it - just the waiting. Doctor told all...
  2. G

    Positive sweat test and now maybe not CF?

    No I dont mind - we started at St Louis Childrens Hospital and I am sure they have a great rep but it just wasnt for us. My daughter in law hated not being able to speak to someone when she needed to - etc. So now we go to Childrens Mercy in KC and love it - just the waiting. Doctor told all...
  3. G

    Positive sweat test and now maybe not CF?

    No I dont mind - we started at St Louis Childrens Hospital and I am sure they have a great rep but it just wasnt for us. My daughter in law hated not being able to speak to someone when she needed to - etc. So now we go to Childrens Mercy in KC and love it - just the waiting. Doctor told all...
  4. G

    Positive sweat test and now maybe not CF?

    No I dont mind - we started at St Louis Childrens Hospital and I am sure they have a great rep but it just wasnt for us. My daughter in law hated not being able to speak to someone when she needed to - etc. So now we go to Childrens Mercy in KC and love it - just the waiting. Doctor told all...
  5. G

    Positive sweat test and now maybe not CF?

    No I dont mind - we started at St Louis Childrens Hospital and I am sure they have a great rep but it just wasnt for us. My daughter in law hated not being able to speak to someone when she needed to - etc. So now we go to Childrens Mercy in KC and love it - just the waiting. Doctor told all...
  6. G

    Positive sweat test and now maybe not CF?

    No I dont mind - we started at St Louis Childrens Hospital and I am sure they have a great rep but it just wasnt for us. My daughter in law hated not being able to speak to someone when she needed to - etc. So now we go to Childrens Mercy in KC and love it - just the waiting. Doctor told all...
  7. G

    Positive sweat test and now maybe not CF?

    Ely has had upper and lower GI but not a colonoscopy as of yet. I will talk to my son and daughter in law about this and see what they think. At this point I am willing to try most things that arent painful for a little one. They have increased her enzymes last week since her weight gain is so...
  8. G

    Positive sweat test and now maybe not CF?

    Ely has had upper and lower GI but not a colonoscopy as of yet. I will talk to my son and daughter in law about this and see what they think. At this point I am willing to try most things that arent painful for a little one. They have increased her enzymes last week since her weight gain is so...
  9. G

    Positive sweat test and now maybe not CF?

    Ely has had upper and lower GI but not a colonoscopy as of yet. I will talk to my son and daughter in law about this and see what they think. At this point I am willing to try most things that arent painful for a little one. They have increased her enzymes last week since her weight gain is so...
  10. G

    Positive sweat test and now maybe not CF?

    Thanks for asking - I am going to ask my son and daughter in law exactly what the name of the screening is that is being done on El. I also was upset again to think that because of insurance we are waiting and waiting when a fell screening should have been done the first time and we would not...
  11. G

    Positive sweat test and now maybe not CF?

    Thanks for asking - I am going to ask my son and daughter in law exactly what the name of the screening is that is being done on El. I also was upset again to think that because of insurance we are waiting and waiting when a fell screening should have been done the first time and we would not...
  12. G

    Positive sweat test and now maybe not CF?

    Thanks for asking - I am going to ask my son and daughter in law exactly what the name of the screening is that is being done on El. I also was upset again to think that because of insurance we are waiting and waiting when a fell screening should have been done the first time and we would not...
  13. G

    Positive sweat test and now maybe not CF?

    In response to you all - yes we are going to our second CF center in Missouri. The first would not return my daughter in laws calls or even explain things to her so we switched and so far love the type of care and concern from the doctor here. However they ran what they called the first round of...
  14. G

    Positive sweat test and now maybe not CF?

    In response to you all - yes we are going to our second CF center in Missouri. The first would not return my daughter in laws calls or even explain things to her so we switched and so far love the type of care and concern from the doctor here. However they ran what they called the first round of...
  15. G

    Positive sweat test and now maybe not CF?

    In response to you all - yes we are going to our second CF center in Missouri. The first would not return my daughter in laws calls or even explain things to her so we switched and so far love the type of care and concern from the doctor here. However they ran what they called the first round of...
  16. G

    Positive sweat test and now maybe not CF?

    Recently my 5 year old granddughter tested positive with 2 sweat tests - one a 68 and one a 69. Now since 2 rounds of genetic testing has come back and no mutations have been located they are questioning her prior diagnosis. Has anyone heard of this before? She was bleeding in her bowels, had...
  17. G

    Positive sweat test and now maybe not CF?

    Recently my 5 year old granddughter tested positive with 2 sweat tests - one a 68 and one a 69. Now since 2 rounds of genetic testing has come back and no mutations have been located they are questioning her prior diagnosis. Has anyone heard of this before? She was bleeding in her bowels, had...
  18. G

    Positive sweat test and now maybe not CF?

    Recently my 5 year old granddughter tested positive with 2 sweat tests - one a 68 and one a 69. Now since 2 rounds of genetic testing has come back and no mutations have been located they are questioning her prior diagnosis. Has anyone heard of this before? She was bleeding in her bowels, had...
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