• #171205151326

    Thanks so much for responding ladies!!  Her stools have never been normal.  That’s why she’s been through two bowel clinics and rectal biopsy to check for Hirschsprungs.  This is the first time shes been tested for Cf.  I was told I’m not a carrier, I guess they only checked the most common 32 mutations.  I assumed that truely meant that I’m not a carrier.  I refused to have her tested the first time b/c I thought it was impossible.  When I was asked a second time, I thought why not it can’t hurt, two borderline sweat test later and here we are.

    #171205284867

    Thanks so much for responding ladies!! Her stools have never been normal. That’s why she’s been through two bowel clinics and rectal biopsy to check for Hirschsprungs. This is the first time shes been tested for Cf. I was told I’m not a carrier, I guess they only checked the most common 32 mutations. I assumed that truely meant that I’m not a carrier. I refused to have her tested the first time b/c I thought it was impossible. When I was asked a second time, I thought why not it can’t hurt, two borderline sweat test later and here we are.

    #171205416141

    Thanks so much for responding ladies!! Her stools have never been normal. That’s why she’s been through two bowel clinics and rectal biopsy to check for Hirschsprungs. This is the first time shes been tested for Cf. I was told I’m not a carrier, I guess they only checked the most common 32 mutations. I assumed that truely meant that I’m not a carrier. I refused to have her tested the first time b/c I thought it was impossible. When I was asked a second time, I thought why not it can’t hurt, two borderline sweat test later and here we are.

    Profile photo of austisuaustisu
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    #171205151325

    DS’ were never greasy, usually fluffy like cake frosting, floated — was an orangish yellowish color and would leave a ring of residue around the waterline in the toilet bowl.

    Profile photo of austisuaustisu
    Member
    #171205284866

    DS’ were never greasy, usually fluffy like cake frosting, floated — was an orangish yellowish color and would leave a ring of residue around the waterline in the toilet bowl.

    Profile photo of austisuaustisu
    Member
    #171205416140

    DS’ were never greasy, usually fluffy like cake frosting, floated — was an orangish yellowish color and would leave a ring of residue around the waterline in the toilet bowl.

    Profile photo of jaybirdjaybird
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    #171205151324

    For us- Ambry Amplified w/deletions and duplications- a good 5wks.
    Sputum culture- preliminary results- 2 days, final results- about a week.
    eta> stool sample, about 2 days. Fluffy/floating stool- sounds like malabsorption. Slimy- it’s what we see here when Emily passes a lot of mucus, but other times we see greasy stool, which is similar but not quite the same. Greasy generally means undigested fat and if it’s chronic usually means she needs more enzymes.

    Profile photo of jaybirdjaybird
    Member
    #171205284865

    For us- Ambry Amplified w/deletions and duplications- a good 5wks.
    Sputum culture- preliminary results- 2 days, final results- about a week.
    eta> stool sample, about 2 days. Fluffy/floating stool- sounds like malabsorption. Slimy- it’s what we see here when Emily passes a lot of mucus, but other times we see greasy stool, which is similar but not quite the same. Greasy generally means undigested fat and if it’s chronic usually means she needs more enzymes.

    Profile photo of jaybirdjaybird
    Member
    #171205416139

    For us- Ambry Amplified w/deletions and duplications- a good 5wks.

    Sputum culture- preliminary results- 2 days, final results- about a week.

    eta> stool sample, about 2 days.

    Fluffy/floating stool- sounds like malabsorption. Slimy- it’s what we see here when Emily passes a lot of mucus, but other times we see greasy stool, which is similar but not quite the same. Greasy generally means undigested fat and if it’s chronic usually means she needs more enzymes.

    Profile photo of austisuaustisu
    Member
    #171205151320

    DS had a very basic blood panel done at Mayo and it came back within 7 days, if it’s more extensive with deletions, sequencing it can take several weeks. Stool sample took about a day or so. Throat cultures 5-7 days as well, though I always request that copies of lab results be mailed to me as well because sometimes the nurse will just call with the results and I like to see what, if anything is growing and sensitivies to antibiotics.

    Profile photo of austisuaustisu
    Member
    #171205284862

    DS had a very basic blood panel done at Mayo and it came back within 7 days, if it’s more extensive with deletions, sequencing it can take several weeks. Stool sample took about a day or so. Throat cultures 5-7 days as well, though I always request that copies of lab results be mailed to me as well because sometimes the nurse will just call with the results and I like to see what, if anything is growing and sensitivies to antibiotics.

    Profile photo of austisuaustisu
    Member
    #171205416136

    DS had a very basic blood panel done at Mayo and it came back within 7 days, if it’s more extensive with deletions, sequencing it can take several weeks. Stool sample took about a day or so. Throat cultures 5-7 days as well, though I always request that copies of lab results be mailed to me as well because sometimes the nurse will just call with the results and I like to see what, if anything is growing and sensitivies to antibiotics.

    Profile photo of sugarmagsugarmag
    Member
    #171205151319

    Meant to say blood test for genes took 2 weeks for us

    Profile photo of sugarmagsugarmag
    Member
    #171205284861

    Meant to say blood test for genes took 2 weeks for us

    Profile photo of sugarmagsugarmag
    Member
    #171205416135

    Meant to say blood test for genes took 2 weeks for us

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