Cystic Fibrosis Forum (EXP)

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Recent content by ktett821

  1. K

    Curious about Prenatal Testing for CF

    I had the CVS test done at 13 weeks. It had to be done during a very specific timeframe (like between 10 and 13 weeks). Amnio can't be done until 16 weeks. CVS is slightly more risky than amnio, although both carry risks. Even though we were keeping our baby either way, I wanted to know as...
  2. K

    HELP please! CF clinic wants to change dx to CRMS

    Thank you again for your responses. I'm curious if those of you with the same mutations have been sweat tested. If so, what were your results? The clinic we go to is accredited, Children's Healthcare of Atlanta. After the first sweat test, they called and told me to stop all treatments. We...
  3. K

    HELP please! CF clinic wants to change dx to CRMS

    Thank you for sharing your story. I definitely plan to get that second opinion. The problem with changing her dx is that insurance won't cover the vest. He is also mentioning invasive procedures to confirm CF, including putting her under and using a scope to look at her lungs. It just seems...
  4. K

    HELP please! CF clinic wants to change dx to CRMS

    My 10 month old DD was originally dx in utero with CF. Her mutations are DF508 and 3849+10kbC>T. From everything I have read the 3849 mutation is absolutely a CF causing mutation. These two mutations alone should be an automatic CF dx. She is pancreatic sufficient so far, although she is not...
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