Recent content by dmarie781

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    TOBI Podhaler

    My daughter started the new TOBI podhaler last month. I was so happy about having less nebs to sterilize. However, she started having problems with blood in her sputum which is not the norm for her. We stopped using it and the blood in her sputum cleared up. Her doctors agreed the crystals you...
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    g tube question

    I kept putting off having my daughter get a g tube and regret it to this day. She just never could gain wait and I didn't realize how important the weight gain had to lung function. I guess everyone is different but it is a lifesaver for us!
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    Need help! ( from Miami)

    I know the Joe DiMaggio childrens hospital is a CF Center and I know people that go there and love it. I go to St Mary's in West Palm Beach and they have an excellent center.
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    Questions for those with G-tubes

    My daughhter got a g tube 2 1/2 years ago and I wish I would have gotten her one sooner. She has always had a hard time gaining weight which effects lung function. She is doing so much better with the extra nutrition. I highly recommend it. Once you get use to it, it's no problem to maintain.
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    Disney World

    i agree we spent a week there and had a letter from our doctor and never waited in line. Staying in Disney is the only way to go. You get to get into some of the parks early or can stay late if your a park guest. i like Port Orleans as you can take a nice Boat ride to Downtown Disney. I'm a...
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    Disney World

    i agree we spent a week there and had a letter from our doctor and never waited in line. Staying in Disney is the only way to go. You get to get into some of the parks early or can stay late if your a park guest. i like Port Orleans as you can take a nice Boat ride to Downtown Disney. I'm a...
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    Alternative medicine - Aspergillus

    Well my daughter had the one and only case of her Aspergillus moving from her lungs to her discs in her back. It took 5 months to figure out it was a fungul infection and had eroded 1 disc entirely and was working on another. We went through 6 months of extreme stress and she was in excrucating...
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    Alternative medicine - Aspergillus

    Well my daughter had the one and only case of her Aspergillus moving from her lungs to her discs in her back. It took 5 months to figure out it was a fungul infection and had eroded 1 disc entirely and was working on another. We went through 6 months of extreme stress and she was in excrucating...
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    Alternative medicine - Aspergillus

    Well my daughter had the one and only case of her Aspergillus moving from her lungs to her discs in her back. It took 5 months to figure out it was a fungul infection and had eroded 1 disc entirely and was working on another. We went through 6 months of extreme stress and she was in excrucating...
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    Alternative medicine - Aspergillus

    Well my daughter had the one and only case of her Aspergillus moving from her lungs to her discs in her back. It took 5 months to figure out it was a fungul infection and had eroded 1 disc entirely and was working on another. We went through 6 months of extreme stress and she was in excrucating...
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    Free Scandi-shakes and Aquadeks for ZenPep users

    Do you have a phone number to call to get this program?
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    Free Scandi-shakes and Aquadeks for ZenPep users

    Do you have a phone number to call to get this program?
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    Hypertonic Saline

    My daughter has a g tube and the hypertonic saline coughing causes her g tube to hurt. Does anyone else have this issue?
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    Hypertonic Saline

    My daughter has a g tube and the hypertonic saline coughing causes her g tube to hurt. Does anyone else have this issue?
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    When there's a cure.....

    I would like to go through one day not worrying about my daughter. All the treatments, meds, hospitalizations, G tube, coughing, weight gain issues, etc. It is starting to wear on her and steal her happiness. I feel so helpless.
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