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Type: Posts; User: MargaritaChic

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  1. Replies
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    My daughter is between sizes as well and her...

    My daughter is between sizes as well and her torso is long. Respirtech sent me a sizing sheet. I measured her and they were able to create a custom vest to fit her measurements.
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    1,252

    I just bought a copy and can't wait to read it. ...

    I just bought a copy and can't wait to read it. :0)
  3. Replies
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    1,201

    Our clinic has always told us to sterilize/boil...

    Our clinic has always told us to sterilize/boil the fishy masks.
  4. Any drink/smoothie I can make in bulk?

    Great idea. Anything I have tried to make ahead of time breaks down in the refidgerator (ie. separates).
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    2,466

    When/What treatments?

    I think your doctor is leaving the decision up to you because you need to weigh the cost/benefit for your child since the current data did not support putting a child under 6 on the drug.
    My...
  6. Replies
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    3,894

    Neuropsychiatric events with Singulair

    I am surprised that your doctor did not inform you of this side effect before putting your child on the drug. Especially knowing her history.
    Our daughter is 4 and the doctor told us of this...
  7. Replies
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    2,801

    Sould we be doing breathing treatments

    Our clinic (the University of Minnesota) prescribes proactive treatments. Our daughter started on CPT at 8 days old and nebs at 1 month old. She got a Vest at 1 year old. Her baseline is no cough and...
  8. Replies
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    Two Carrier Parents

    I agree. Post in the family section and you will get a lot of info from the moms/dads there.
  9. Replies
    8
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    3,694

    New Wearable Airway Clearance Device

    Interesting! I am also interested in the cost.
    The site states they are creating children's models, which makes me wonder about how they handle the child's growth. Would a person need to purchase...
  10. Interpretation of Ataluren Press Release

    I disagree. There are several CF drugs available that slow progression. I really doubt they all decrease sweat chloride. I don't think sweat chloride is the only predictor of whether the drug...
  11. Replies
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    Are you continuing HTS for

    I believe the .09% was the control group. The participants that actually got HTSrecieved 7%.
    My daughter participated in the study. She does not have significant lung involvement yet. She had her...
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    Are you continuing HTS for

    Does anyone havea link to the study results?
    My daughter is 4and is currently on a 3 week round of HTS due to having been hospitalized for pnemonia and influenza. At this point, we do not plan to...
  13. Replies
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    VX-661 Phase 2 Study

    semperfiohana, the list you posted are the most common mutations. <strong>Not</strong> the most common <strong>gating</strong> mutations.
    Does anyone have a list of what mutations are gating...
  14. Replies
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    VX-661 Phase 2 Study

    semperfiohana, the list you posted are the most common mutations. <strong>Not</strong> the most common <strong>gating</strong> mutations.
    Does anyone have a list of what mutations are gating...
  15. Replies
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    6,447

    Best CF Centers

    <P>Our daughter goes to theUniversity of Minnesota. It is one of the clinics featured in the previously mentioned article. Dr. Warren Warrick was a Pioneer in CF and invented the Vest. He has now...
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    6,447

    Best CF Centers

    <P>Our daughter goes to the&nbsp;University of Minnesota.&nbsp; It is one of the clinics featured in the previously mentioned article.&nbsp; Dr. Warren Warrick was a Pioneer in CF and invented the...
  17. Replies
    80
    Views
    6,447

    Best CF Centers

    <P><BR>Our daughter goes to theUniversity of Minnesota. It is one of the clinics featured in the previously mentioned article. Dr. Warren Warrick was a Pioneer in CF and invented the Vest. He has now...
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    2,278

    It was negative!

    Test results can vary greatly by day and by tester.
  19. Replies
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    2,278

    It was negative!

    Test results can vary greatly by day and by tester.
  20. Replies
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    2,278

    It was negative!

    Test results can vary greatly by day and by tester.
  21. Replies
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    5,741

    Working moms vs. stay at home??

    <P>I know many people will disagree with this, BUT Our CF clinic told us that&nbsp;statistically children with CF who do NOT attend daycare until after the age of 3 do better&nbsp;with their...
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    5,741

    Working moms vs. stay at home??

    <P>I know many people will disagree with this, BUT Our CF clinic told us thatstatistically children with CF who do NOT attend daycare until after the age of 3 do betterwith their health.</P>...
  23. Replies
    53
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    5,741

    Working moms vs. stay at home??

    <P><BR>I know many people will disagree with this, BUT Our CF clinic told us thatstatistically children with CF who do NOT attend daycare until after the age of 3 do betterwith their health.</P>...
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    Is there snow where you are?

    We are in Minnesota. LOTS and LOTs of snow.
  25. Replies
    50
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    3,790

    Is there snow where you are?

    We are in Minnesota. LOTS and LOTs of snow.
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