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  1. Replies
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    re: Normal Anxiety

    Hi Mom03,

    First, welcome! This site is full of helpful information and people. You are not alone!

    I have 3 kids with CF, now ages 14, 22 and 27. They were diagnosed 7 years ago and they have...
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    I am so sorry to hear about your travails. I...

    I am so sorry to hear about your travails.
    I hope you find it effective in the end!
  3. Wow

    They say truth is stranger than fiction. How amazing that you worked in a lab with CF bugs!

    I know how I felt when my kids got diagnosed and then I started to wonder about my own unusual symptoms....
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    I know this post is from October, but I have a...

    I know this post is from October, but I have a few kids with this mutation. I also carry it, but I don't have any noteworthy symptoms. I hope your husband is feeling better now that he is getting...
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    It is called the "Eradication Protocol" and is...

    It is called the "Eradication Protocol" and is done routinely in Europe. The US was behind on this, but I think it is done more now. [Push Control F on your keyboard and search for "eradication" on...
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    Having reread the original post, my impression is...

    Having reread the original post, my impression is that the "testing" was simply a sweat test. What you really need to insist on is GENETIC testing to look for CF Mutations. That is a simple blood...
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    You situation sounds so challenging. If you get a...

    You situation sounds so challenging. If you get a full genetic testing done then that is enough to find if the child has 2 CF genes.

    It doesn't sound worth fighting with people if you can get...
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    How do I delete a post?

    How do I delete something I posted?

    Thanks!
  9. Replies
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    I found this very inspiring....

    I found this very inspiring. https://www.youtube.com/watch?v=nWn4lLwr4Gw

    I do believe that being active, etc is key to optimal lung functions. One percent up or down doesn't seem so significant to...
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    I don't know how to answer your question, really,...

    I don't know how to answer your question, really, but have you done a sweat test?

    My daughter was PERFECTLY fine until she turned 14 and then coughed non-stop until her diagnosis a year later. She...
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    I didn't have to face this news with a newborn....

    I didn't have to face this news with a newborn. How overwhelming!

    My daughter got diagnosed at 15 and only thanks to a shrewd pulmonologist. She just started coughing at 14 and coughed and coughed...
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    535...

    535 http://www.cfmedicine.com/cfdocs/cftext/homeiv.htm

    I am assuming that this is what you are talking about.

    My daughter has never been in hospital and she did this for of IV treatment a few...
  13. Thread: Venting

    by JustaCFmom
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    Vent away! :-) I am so sorry you are having...

    Vent away! :-)

    I am so sorry you are having such a hard time. You schedule sounds really intense.

    Would sleeping propped up help you at all? Do you have a way to check your oxygen saturation...
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    From what I understand, it would be quite rare...

    From what I understand, it would be quite rare for someone with CF to have a fever from these infections. (I suppose part of the problem)

    Honestly, I would push for some kind of IV antibiotic...
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    My 24 year old son has reached 126% pred. He is...

    My 24 year old son has reached 126% pred. He is VERY athletic & loves running and being active. We also never smoked. I am sure that helps. My daughter got up to 118% when she was doing all of her...
  16. Too true!! Our family doctor was totally...

    Too true!!

    Our family doctor was totally amazed when my kids got their diagnosis. They would have had much more lung damage if not for a cluey pulmonologist (who ran the CF clinic at a near by...
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    My 24 year old son only got diagnosed because of...

    My 24 year old son only got diagnosed because of his sister. [She was coughing for over a year.] We screened all our kids once we got the news. His cough went underground once he got into running and...
  18. My kids are totally Ashkenazi Jewish. I remember...

    My kids are totally Ashkenazi Jewish. I remember feeling certain that they wouldn't find their mutations when we did the genetic test. They were so much older, and had such a milder presentation,...
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    I will add that another child, not even a...

    I will add that another child, not even a carrier, coughed her way through an entire winter. I think the main issue was post nasal drip. I have also learned that sinusitis can cause coughing. Are...
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    I hope you get your answers. We were lucky...

    I hope you get your answers. We were lucky because it only took us a year for my daughter to get her diagnosis at age 15; and it was straightforward with a positive sweat test & 2 CF mutations. Case...
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    QUOTE Is it not normal to constantly be coughing?...

    QUOTE Is it not normal to constantly be coughing?

    My kids' norm is NOT COUGHING, really! My daughter coughed a year straight, until her diagnosis; but with the proper treatment, she stopped...
  22. Hi MyBabyCeline! Welcome to this amazing forum...

    Hi MyBabyCeline! Welcome to this amazing forum with a great number of helpful, informed people!
    My son cultures Hemophilus Influenzae more often than not, and the doctors usually ignore it. He has...
  23. Rosie 55 beat me to the keyboard & she is right...

    Rosie 55 beat me to the keyboard & she is right on the mark. I wouldn't wait - I would go with the ER approach. I lost most of my hearing in one of my ears by just going to doctors instead of the ER...
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    I am not dealing with your age, but my son LOVES...

    I am not dealing with your age, but my son LOVES halva (maybe available in a health food store if you can't find it at your regular grocerie store. That was a tip from our dietician. It is high...
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    Hi Krystin, First of all, welcome to this...

    Hi Krystin,

    First of all, welcome to this amazing forum. There are loads of wonderful supportive people and information. I don't know much about the genetics and having negative sweat tests, but...
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