We saw the CF specialist

[mommy2mickie]

<p>I think I'm in the same boat you are, only we've been dealing with this in three different states for over three years now. It started in Virginia when my daughter was 6....she had unexplained attacks, productive coughs, unexplained fevers, constantly sick with sinus infections, etc. Her pulmonologist sent her for a sweat test out of curiosity and it came up borderline at 43. In a 2 month period, she had three more, ranging from 41 to 53. So we went to UVA, saw a great doctor, who decided to diagnose her with a mild form of CF.
<p>Well, upon moving down to Georgia, we saw a pediatric pulmonologist in Chattanooga, and he was a complete crock. He retracted that diagnosis when her Ambry Genetics Test came back 7T/7T and said he didn't know what it was and sent us on our way....but only after doing a bronchoscopy on her and finding 3 different types of bacteria growing on her lungs.
<p>My daughter has just turned 9and she's starting to get worse. Constant coughing, yet she won't spit out what she coughs up, which makes it worse. She can't go outside for more than 10 minutes without getting a very red face andshe's on nebulizer treatments at least twice a day.We finally got referred to Emory CF children's clinic in Atlanta, who fortunately heard of her CF doctor up at UVA and the head of the department is willing to see her because she has such an unusual case. We head down to Atlanta on Tuesday morning for a 5 hour appointment of blood draws, stool samples, and sweat tests. I'm sad to say that she's getting used to it. She's missed over 15 days of school this year, but it's becoming the norm and her teachers are very understanding.
<p>I wish you the best and hopefully we can all figure out what's going on! I just want my little girl to get better! <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Mistyjo]

mommy2mickie,
I get so frustrated by docs who think that everyone fits into this nice little box and if you don't fit into the box then you  must have a virus or it's in your head!!!  Sometimes I wonder how they made it through med school!  All we can do is keep fighting for our kids.  I've been blessed to have good docs for my little girl.  When I was caring for my Mom I dealt with multiple probs from docs who thought they knew everything!  They refused to listen to me about her and her symptoms.  I had one tell me all my Mom had to do was get up and walk and she would be fine, she passed away a month later.  She was full of mrsa, in lungs, kidneys, pocket of it in bowels.  My point is trust your instincts!! Most of the time, you are right!!
Keep me updated on your little girl.
Good luck and God bless!

 

[Mistyjo]

mommy2mickie,
I get so frustrated by docs who think that everyone fits into this nice little box and if you don't fit into the box then you must have a virus or it's in your head!!! Sometimes I wonder how they made it through med school! All we can do is keep fighting for our kids. I've been blessed to have good docs for my little girl. When I was caring for my Mom I dealt with multiple probs from docs who thought they knew everything! They refused to listen to me about her and her symptoms. I had one tell me all my Mom had to do was get up and walk and she would be fine, she passed away a month later. She was full of mrsa, in lungs, kidneys, pocket of it in bowels. My point is trust your instincts!! Most of the time, you are right!!
Keep me updated on your little girl.
Good luck and God bless!

 

[Mistyjo]

<p>mommy2mickie,
<p>I get so frustrated by docs who think that everyone fits into this nice little box and if you don't fit into the box then you must have a virus or it's in your head!!! Sometimes I wonder how they made it through med school! All we can do is keep fighting for our kids. I've been blessed to have good docs for my little girl. When I was caring for my Mom I dealt with multiple probs from docs who thought they knew everything! They refused to listen to me about her and her symptoms. I had one tell me all my Mom had to do was get up and walk and she would be fine, she passed away a month later. She was full of mrsa, in lungs, kidneys, pocket of it in bowels. My point is trust your instincts!! Most of the time, you are right!!
<p>Keep me updated on your little girl.
<p>Good luck and God bless!

 

[bmombtoo]

Hi,
I found waiting to be the hard part. I saw that you mentioned nasal potential differencel testing. My son had a borderline sweat and a positive sweate. He was finally diagnosed by nasal differential. It is painless and involves putting small tubes in the nose and running fluids through. My son was 11 when  it was done. I've had it done too and it is pretty unevasive.
Best of luck to you.

 

[bmombtoo]

Hi,
I found waiting to be the hard part. I saw that you mentioned nasal potential differencel testing. My son had a borderline sweat and a positive sweate. He was finally diagnosed by nasal differential. It is painless and involves putting small tubes in the nose and running fluids through. My son was 11 when it was done. I've had it done too and it is pretty unevasive.
Best of luck to you.

 

[bmombtoo]

<p>Hi,
<p>I found waiting to be the hard part. I saw that you mentioned nasal potential differencel testing. My son had a borderline sweat and a positive sweate. He was finally diagnosed by nasal differential. It is painless and involves putting small tubes in the nose and running fluids through. My son was 11 when it was done. I've had it done too and it is pretty unevasive.
<p>Best of luck to you.