Cystic Fibrosis Forum (EXP)

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  1. M

    HTS back ordered?

    I actually just switched my 7 yo to the lower 3% dosage and i would be happy to give the 7% that we do not need! Please pm me your address and i will send it NO CHARGE of course!n Assuming you are in the us <img src="i/expressions/face-icon-small-smile.gif" border="0"> <br /> <br />Blythe <br...
  2. M

    Trying to put together a Vest system

    I would check with your local hospital- they have basic white ones. Or call the vest company and ask for them for one. They always update ours as my daughter outgrows them?? Just my thoughts! Good luck!
  3. M

    Trying to put together a Vest system

    I would check with your local hospital- they have basic white ones. Or call the vest company and ask for them for one. They always update ours as my daughter outgrows them?? Just my thoughts! Good luck!
  4. M

    Trying to put together a Vest system

    I would check with your local hospital- they have basic white ones. Or call the vest company and ask for them for one. They always update ours as my daughter outgrows them?? Just my thoughts! Good luck!
  5. M

    Natural substances for Nebulizer

    I am also into natural healing with my daughter (7 yo w/cf) BUT i would NEVER EVER use an inhaled subject in her lungs at all unless it was FDA approved. I use the GSE in her sinus rinses only. I use tea tree oil for cleaning floors, counter-tops, etc. I think the best approach especially for a...
  6. M

    Natural substances for Nebulizer

    I am also into natural healing with my daughter (7 yo w/cf) BUT i would NEVER EVER use an inhaled subject in her lungs at all unless it was FDA approved. I use the GSE in her sinus rinses only. I use tea tree oil for cleaning floors, counter-tops, etc. I think the best approach especially for a...
  7. M

    Natural substances for Nebulizer

    I am also into natural healing with my daughter (7 yo w/cf) BUT i would NEVER EVER use an inhaled subject in her lungs at all unless it was FDA approved. I use the GSE in her sinus rinses only. I use tea tree oil for cleaning floors, counter-tops, etc. I think the best approach especially for a...
  8. M

    In the hospital- cough has not gone away since last Nov.

    <div>Please help... I am so sad & confused! My daughter started all this with an RSV virus and Pseudomanos last Nov. she just cannot kick this cough?! She cultured Pseudomonas again in June did cipro/tobi/caysten  all summer and now in the hospital again w/ IV tobi. She did a bronch last feb...
  9. M

    In the hospital- cough has not gone away since last Nov.

    Please help... I am so sad & confused! My daughter started all this with an RSV virus and Pseudomanos last Nov. she just cannot kick this cough?! She culturedPseudomonas again in Junedid cipro/tobi/caysten all summer and now in the hospital again w/ IV tobi. She did a bronch last feb. and it...
  10. M

    In the hospital- cough has not gone away since last Nov.

    Please help... I am so sad & confused! My daughter started all this with an RSV virus and Pseudomanos last Nov. she just cannot kick this cough?! She culturedPseudomonas again in Junedid cipro/tobi/caysten all summer and now in the hospital again w/ IV tobi. She did a bronch last feb. and it...
  11. M

    WHAT WOULD YOU DO~help!

    TonyaH- this is the confusing part... They DID test her IgE levels and they are "low" within normal range. BUT they also tested to see what molds she was allergic to and she IS allergic to the aspergillus!! BUT because her Ige levels show NO inflammation they are NOT treating it EVEN THOU SHE IS...
  12. M

    WHAT WOULD YOU DO~help!

    TonyaH- this is the confusing part... They DID test her IgE levels and they are "low" within normal range. BUT they also tested to see what molds she was allergic to and she IS allergic to the aspergillus!! BUT because her Ige levels show NO inflammation they are NOT treating it EVEN THOU SHE IS...
  13. M

    WHAT WOULD YOU DO~help!

    TonyaH- this is the confusing part... They DID test her IgE levels and they are "low" within normal range. BUT they also tested to see what molds she was allergic to and she IS allergic to the aspergillus!! BUT because her Ige levels show NO inflammation they are NOT treating it EVEN THOU SHE IS...
  14. M

    WHAT WOULD YOU DO~help!

    TonyaH- How do i pursure testing?? She is in the hospital right now i have given the docs her bloodwork results. When she was admited last Feb. they also tested her Ige and they are within "normal" range? So therefore this has lingered and the cf docs have done nothing for the aspergillus. Her...
  15. M

    WHAT WOULD YOU DO~help!

    TonyaH- How do i pursure testing?? She is in the hospital right now i have given the docs her bloodwork results. When she was admited last Feb. they also tested her Ige and they are within "normal" range? So therefore this has lingered and the cf docs have done nothing for the aspergillus. Her...
  16. M

    WHAT WOULD YOU DO~help!

    TonyaH- How do i pursure testing?? She is in the hospital right now i have given the docs her bloodwork results. When she was admited last Feb. they also tested her Ige and they are within "normal" range? So therefore this has lingered and the cf docs have done nothing for the aspergillus. Her...
  17. M

    WHAT WOULD YOU DO~help!

    Thank you for your replies! We went to the cf clinic today and will be checking into club med tomorrow. I am sad we have waited and wasted 2 months on cayston and tobi for nothing to change. I know this is our last resort. I just hope this helps? This is her 3rd hospital stay this year. Her x...
  18. M

    WHAT WOULD YOU DO~help!

    Thank you for your replies! We went to the cf clinic today and will be checking into club med tomorrow. I am sad we have waited and wasted 2 months on cayston and tobi for nothing to change. I know this is our last resort. I just hope this helps? This is her 3rd hospital stay this year. Her x...
  19. M

    WHAT WOULD YOU DO~help!

    Thank you for your replies! We went to the cf clinic today and will be checking into club med tomorrow. I am sad we have waited and wasted 2 months on cayston and tobi for nothing to change. I know this is our last resort. I just hope this helps? This is her 3rd hospital stay this year. Her x...
  20. M

    How long do enzymes last?

    I have a cfer going into 2nd grade this 2011-2012 year! The past 2 years we had her leave recess EARLY WITH A FRIEND to stop by the nurses office wash up and then THEY BOTH would go straight to the front of the lunch room line. This way Brinly could sit with someone she wanted and it did not...
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