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  1. Replies
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    Rude Hospital Nurses

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Murgie</b></i>
    " Maybe this is why you cant manage his health care at home"..I am so angry.</end quote>
    This sentence would have me...
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    What to do when G-tube doesn't help

    Are you doing continuous feeds? Our son wasn't able to tolerate the continuous feeds, so we switched to bolus feeds overnight. He now gets 2 6.3 ounce bolus feeds overnight (he's 20 months).
    That...
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    Nothing But Hope

    One of the women I work with has a daugther whose best friend has CF. They are 18 and she plays lacrosse, is incredibly healthy and doing well. When she was born, they were told that she'd be lucky...
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    When/What treatments?

    Our little one has been on HTS since he was about 10 weeks old. He does it once a day, the 7% solution at (I think) 4 mL. It should take no more than 15 minutes with Pari machine - if it takes...
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    Possible Meconium Ileus update

    That's fantastic news!! Hope you have a healthy baby on your hands!
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    Possible Meconium Ileus update

    Hang in there - there is life after MI. Our little one is 19 months old now and for people who don't know us, they have no idea he's ever had any issues!
    And I also caution about being panicky...
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    Possible Meconium Ileus update

    I commend you on getting more information and trying to be more informed.
    We went through meconium ileus as well, with surgery 2 days after birth, ileostomy for 2 months, reattachment surgery and...
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    Sould we be doing breathing treatments

    That's really strange on the note from Hopkins. We go to Hopkins as well and have been on preventative treatment since our little one was 10 weeks old. He got his first cold, they prescribed HTS &...
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    Should I push for testing?

    Get tested - just in case. We had no family history either and we have a little CFer. The early years are critical and weight gain plays a huge role in lung health.
    I'm surprised your doctor isn't...
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    Should I push for testing?

    Get tested - just in case. We had no family history either and we have a little CFer. The early years are critical and weight gain plays a huge role in lung health.
    I'm surprised your doctor isn't...
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    can anyone recommend a good vaccuum

    We have a Dyson and it's been amazing. We have the one for pets (DC 25, I think). The attachments aren't great, but the suction is incredible. The first time I used it I was horrified at how much my...
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    can anyone recommend a good vaccuum

    We have a Dyson and it's been amazing. We have the one for pets (DC 25, I think). The attachments aren't great, but the suction is incredible. The first time I used it I was horrified at how much my...
  13. Thread: HELP

    by CJPsMom
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    HELP

    While we haven't had this happen to us, one of our friends through the CF clinic had a similar experience - no symptoms, went in for what they thought was a healthy visit and wound up admitted that...
  14. Thread: HELP

    by CJPsMom
    Replies
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    1,074

    HELP

    While we haven't had this happen to us, one of our friends through the CF clinic had a similar experience - no symptoms, went in for what they thought was a healthy visit and wound up admitted that...
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    Could we be on the road to CF?

    The others are right in getting the testing done.
    I'll also let you know that the enzymes don't necessarily clear up the constipation. My little guy is 15 months old and on enzymes & Miralax daily.
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    Could we be on the road to CF?

    The others are right in getting the testing done.
    I'll also let you know that the enzymes don't necessarily clear up the constipation. My little guy is 15 months old and on enzymes & Miralax daily.
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    G tube options????

    We did the last option only because we were concerned about the stomach stitches, etc. Given that this was the third surgery (ileostomy & reattachment at birth & 8 weeks), we wanted something much...
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    G tube options????

    We did the last option only because we were concerned about the stomach stitches, etc. Given that this was the third surgery (ileostomy & reattachment at birth & 8 weeks), we wanted something much...
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    Update and a question...

    THe answer to your question is yes. There are lots of people here who had that exact same experience. I'm pretty sure I saw you on the special needs board on The Bump - there are a couple of people...
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    Update and a question...

    THe answer to your question is yes. There are lots of people here who had that exact same experience. I'm pretty sure I saw you on the special needs board on The Bump - there are a couple of people...
  21. Thread: Creon dosage

    by CJPsMom
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    Creon dosage

    I wouldn't say that he was in error, but I would ask about the dosage. I do it at every clinic appointment. Are we at the right level, especially if I have any concerns about little one's tummy!
  22. Thread: Creon dosage

    by CJPsMom
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    45
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    4,477

    Creon dosage

    I wouldn't say that he was in error, but I would ask about the dosage. I do it at every clinic appointment. Are we at the right level, especially if I have any concerns about little one's tummy!
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    Sick Relative Coming to Visit

    I had a similar situation as one of the other posters. About 2 weeks after our little guy came home for a month in the NICU, I got a nasty cold. I wore a mask, washed & sanitized my hands like crazy...
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    Sick Relative Coming to Visit

    I had a similar situation as one of the other posters. About 2 weeks after our little guy came home for a month in the NICU, I got a nasty cold. I wore a mask, washed & sanitized my hands like crazy...
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    Advice...help...opinions...venting!

    We had Tobi when our little one was 10 months old and he did fine. We did full vials, twice daily. It knocked those PA's right out!
    As for the Peptamen & insurance, work the g-tube angle. Our...
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