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Type: Posts; User: Lovemykids2017

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  1. I'm very happy for you! Our final sweat test was...

    I'm very happy for you!
    Our final sweat test was normal. We are obviously grateful. I'm praying for all of the people here. I WILL be walking for Cystic Fibrosis, and donating. May a cure, or a...
  2. Thank you so much for your kind words. We go back...

    Thank you so much for your kind words. We go back tomorrow. Your intermediate level results make it even more up in the air. I hope that whatever the results are, there is some positive news coming...
  3. Crazy actually. It came back 19. 40 points...

    Crazy actually. It came back 19. 40 points lower! Both arms. They believe this is correct and with his newborn screen being very low (7th percentile)(mandatory newborn screens in my state), they...
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    Thanks for your reply.

    Thanks for your reply.
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    Wow! You're approved a getting Kalydeco so soon!...

    Wow! You're approved a getting Kalydeco so soon! That's great.

    I'm curious, for my own situation, did your state do a newborn screening? And if so, did your kids not screen positive or borderline?
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    I'm very sorry. I am waiting on testing for my 6...

    I'm very sorry. I am waiting on testing for my 6 year old son who got a 59 on his sweat test. None of this is easy to accept. It sounds like your kids have been very healthy until now, and that's a...
  7. Thank You. I hope we both get answers soon.

    Thank You. I hope we both get answers soon.
  8. Thank you. He's going to Boston Children's...

    Thank you. He's going to Boston Children's Hospital for the repeat, testing a stool sample and probably genetic blood test. Unless the sweat test comes back much lower (which I'm of course hoping,...
  9. Thank you for your reply. We're at the beginning...

    Thank you for your reply. We're at the beginning of diagnosis, like anybody in this situation, I'm hoping I'll get news that the first sweat test was a fluke. 58/59. My almost 6 year old's newborn...
  10. Just curious differences in repeat sweat test?

    We are going for a repeat sweat test on Wednesday. Just curious if your child's repeat test came out very similar? Or a big difference between 1st and 2nd?
  11. Son sweat test 58/59 probable CF almost 6

    My Son is almost 6 and got a 58/59 On his sweat test and the Dr. Who delivered the news seemed confident he has it. If this is confirmed to be CF, is that a fairly low number, or possibly a sign it's...
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