Cystic Fibrosis Forum (EXP)

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Recent content by jsg

  1. J

    Repeat sweat tests, crms, and one scared mom

    Hello! My 1 year old son was diagnosed with CRMS based on NBS (intial IRT 92). Full sequence shows Delta 508 and one mutation that two labs classify as a variation of unknown significance but the state of CA thinks is likely disease causing associated with mild CF. He has had three sweat...
  2. J

    Thanks so much for your reply. I'm just seeing this message now as I haven't logged in since...

    Thanks so much for your reply. I'm just seeing this message now as I haven't logged in since Sept. I have my child's third sweat test tomorrow and am freaking out a bit. I would like to join the group, but would it show to all my friends? I feel like this is my son's info to share if/when ready...
  3. J

    Hello! Per your question, my baby has Delta 508 an Y 101c4. I'm so terribly scare re crms still...

    Hello! Per your question, my baby has Delta 508 an Y 101c4. I'm so terribly scare re crms still. Do you have any advice? Every time I kiss him I think he's so incredibly salty and now has cf. I'm afraid of water, taking him around other babies etc. If you have any insight, it would be much...
  4. J

    Drinking water

    Living with a newborn with a positive crms result Hello. My 5 week old son was recently diagnosed with crms. This question may belong in a different area, but not sure where to post. I want to avoid pseudomonas infection and the Dr mentioned standing water. I read that while drinking tap water...
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