Cystic Fibrosis Newly Diagnosed Forum This is an RSS file. You can use it to subscribe to this data in your favourite RSS reader or to display this data on your own website or blog.

CF testing, at 23?
Hey, I don't know where to start with this one - first off, i'm 23. I have a lot of health problems, and also have a lot of friends with CF because of being in hospitals a lot. I've always been told I have very brittle and unstable asthma, and that because of my asthma I get lots of infections. However its got to the point where I am in hospital every few months, my lung function is rapidly dropping and we cant seam to get the infections under control. So I was referred too another hospital (Papworth) which specializes in CF/ Non-CF bronchiectasis and recurrent difficult infections. They have ran lots of tests, one of wh...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 12, 2014 Category: Respiratory Medicine Authors: Dancingintherain Tags: Newly Diagnosed Source Type: forums

When (If) did your CRMS turn into CF?
I've been wondering this since my daughter was diagnosed with CRMS and after reading hundreds of posts I'm just going to ask: If your child (or you) was diagnosed with CRMS when did symptoms start to appear if they appeared at all? Now, I know this varies by mutations and by child and just because your child saw symptoms at 2 years old doesn't mean that my daughter will. I guess I just believe knowledge is power and this is something I would like to know :o) Thanks! (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - September 29, 2014 Category: Respiratory Medicine Authors: lauryn.tubes Tags: Newly Diagnosed Source Type: forums

4 week old has CRMS for right now
Here is what I know so far--we went to Children's hospital Monday to get the sweat test and consult. The sweat test results were indeterminate--one was 33 and the other was 30. For infants, anything 29 or less is considered negative. 30-59 is indeterminate meaning CF is possible, and 60+ is considered positive. So I'm not sure if there's any weight in the results being on the lower end of intermediate or if intermediate means intermediate whether 30 or 55. Nothing is known about her second mutation, I1366T. So they said we're in a gray area based on the mutations--it's not a yes but it's not a no. Based on the sweat test...
Source: Cystic Fibrosis Newly Diagnosed Forum - September 26, 2014 Category: Respiratory Medicine Authors: Mama2Five Tags: Newly Diagnosed Source Type: forums

Pseudomonas Fluorescens?
My 12 month old son just tested positive for Pseudomonas Fluorescens and I'm just very confused with what it means exactly. His doctor explained to me that he would start on Tobi and that it's not to be taken lightly. I am so scared and confused and was just hoping to hear from someone that can tell me about it and what it means for my son.. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - September 15, 2014 Category: Respiratory Medicine Authors: ChristyLee619 Tags: Newly Diagnosed Source Type: forums

Where to receive the best care - Stanford or Mayo Clinic?
My 2 week old Granddaughter was just diagnosed with CF. I've been reading as much as I can about the condition and feel completely devastated for my daughter and grandbaby. I just found out yesterday so I still need some time to digest it all. Medical conditions are, unfortunately, nothing new to my lil family. I have 3 daughters. My oldest and her 1 year old son, my grandbaby, have Cavernous Angioma's. Many bleeds, a brain surgery and another surgery when she had a bleed in the base of her brain stem while she was pregnant with my Grandson. Unfortunately, my girls Daddy passed last October and apparently he had i...
Source: Cystic Fibrosis Newly Diagnosed Forum - August 11, 2014 Category: Respiratory Medicine Authors: TamaraLynn Tags: Newly Diagnosed Source Type: forums