Search results

  1. L

    What would you do?

    Dana-thanks for your comments. It was scary ,however, to read your remarks about the daycare saying she just wanted to be held all the time. My daughter is in a moms day out program at our church and at first they would comment on what a "snuggler" she was. They would all comment on how she...
  2. L

    What would you do?

    Dana-thanks for your comments. It was scary ,however, to read your remarks about the daycare saying she just wanted to be held all the time. My daughter is in a moms day out program at our church and at first they would comment on what a "snuggler" she was. They would all comment on how she...
  3. L

    What would you do?

    Dana-thanks for your comments. It was scary ,however, to read your remarks about the daycare saying she just wanted to be held all the time. My daughter is in a moms day out program at our church and at first they would comment on what a "snuggler" she was. They would all comment on how she...
  4. L

    What would you do?

    The problem (I think) is that the doctors just aren't familiar enough with CF. I understand that doctors are only human and have a limit as to what they can know, however, I just wish that for once, I could hear one of them say, "well you know, I just don't really know what is going on". I would...
  5. L

    What would you do?

    The problem (I think) is that the doctors just aren't familiar enough with CF. I understand that doctors are only human and have a limit as to what they can know, however, I just wish that for once, I could hear one of them say, "well you know, I just don't really know what is going on". I would...
  6. L

    What would you do?

    The problem (I think) is that the doctors just aren't familiar enough with CF. I understand that doctors are only human and have a limit as to what they can know, however, I just wish that for once, I could hear one of them say, "well you know, I just don't really know what is going on". I would...
  7. L

    What would you do?

    Jazzysmom, I know what you mean about their comment re:"the look of a CF kid". That alone made me concerned that they didn't have a clue what CF is really all about. I feel like I'm stuck between a rock and a hard place since we have only 1 CF doc in our area. He seems to put ALOT of weight on...
  8. L

    What would you do?

    Jazzysmom, I know what you mean about their comment re:"the look of a CF kid". That alone made me concerned that they didn't have a clue what CF is really all about. I feel like I'm stuck between a rock and a hard place since we have only 1 CF doc in our area. He seems to put ALOT of weight on...
  9. L

    What would you do?

    Jazzysmom, I know what you mean about their comment re:"the look of a CF kid". That alone made me concerned that they didn't have a clue what CF is really all about. I feel like I'm stuck between a rock and a hard place since we have only 1 CF doc in our area. He seems to put ALOT of weight on...
  10. L

    What would you do?

    She did have the full Ambry panel. However, she had only one sweat test performed. Our children's hospital is apparently a CF accreditted site but we have never seen a CF doctor. Just a lab tech in the normal children's lab performed the sweat test. My problem I'm having is that none of the docs...
  11. L

    What would you do?

    She did have the full Ambry panel. However, she had only one sweat test performed. Our children's hospital is apparently a CF accreditted site but we have never seen a CF doctor. Just a lab tech in the normal children's lab performed the sweat test. My problem I'm having is that none of the docs...
  12. L

    What would you do?

    She did have the full Ambry panel. However, she had only one sweat test performed. Our children's hospital is apparently a CF accreditted site but we have never seen a CF doctor. Just a lab tech in the normal children's lab performed the sweat test. My problem I'm having is that none of the docs...
  13. L

    What would you do?

    Hi everyone. I'm really hoping someone may be able to offer some suggestions. Almost 18 months ago, our then 2 y/o dd was diagnosed with toxoplasmosis. Docs thought it was strange that she became sick with it and was then even treated with big time meds for it. ("Healthy kids do not become...
  14. L

    What would you do?

    Hi everyone. I'm really hoping someone may be able to offer some suggestions. Almost 18 months ago, our then 2 y/o dd was diagnosed with toxoplasmosis. Docs thought it was strange that she became sick with it and was then even treated with big time meds for it. ("Healthy kids do not become...
  15. L

    What would you do?

    Hi everyone. I'm really hoping someone may be able to offer some suggestions. Almost 18 months ago, our then 2 y/o dd was diagnosed with toxoplasmosis. Docs thought it was strange that she became sick with it and was then even treated with big time meds for it. ("Healthy kids do not become...
  16. L

    S912L (other mutation unknown)

    We just received the results from our Ambry panel There was a mutation found with the S912L gene. Is anyone familiar with this one? Any info would be greatly appreciated!
  17. L

    S912L (other mutation unknown)

    We just received the results from our Ambry panel There was a mutation found with the S912L gene. Is anyone familiar with this one? Any info would be greatly appreciated!
  18. L

    S912L (other mutation unknown)

    We just received the results from our Ambry panel There was a mutation found with the S912L gene. Is anyone familiar with this one? Any info would be greatly appreciated!
  19. L

    S912L (other mutation unknown)

    We just received the results from our ambry panels and one mutation was found - the S912L. Is anyone familiar with this one? How have you seen it present? More GI? More lung? Just trying to figure this all out. Thanks for everyone's help!
  20. L

    S912L (other mutation unknown)

    We just received the results from our ambry panels and one mutation was found - the S912L. Is anyone familiar with this one? How have you seen it present? More GI? More lung? Just trying to figure this all out. Thanks for everyone's help!
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