What's lowest sweat test result,but was still DX w/CF thru genetic testing

[jdprecious]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JORDYSMOM</b></i>
We were told it was allergies and asthma blah blah blah!
Stacey</end quote></div>

Exactly what we were told as well. I knew better than that bc all of the durn asthma and allergy medication was NOT making her any better. She was dx at 3 yrs old and I had told the docs for a year and a half what *I thought* it was, only to be shot down. Her sweat tests were 79 and 93 respectively. No argument after that.

 

[jdprecious]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JORDYSMOM</b></i>
We were told it was allergies and asthma blah blah blah!
Stacey</end quote></div>

Exactly what we were told as well. I knew better than that bc all of the durn asthma and allergy medication was NOT making her any better. She was dx at 3 yrs old and I had told the docs for a year and a half what *I thought* it was, only to be shot down. Her sweat tests were 79 and 93 respectively. No argument after that.

 

[jdprecious]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JORDYSMOM</b></i>
We were told it was allergies and asthma blah blah blah!
Stacey</end quote></div>

Exactly what we were told as well. I knew better than that bc all of the durn asthma and allergy medication was NOT making her any better. She was dx at 3 yrs old and I had told the docs for a year and a half what *I thought* it was, only to be shot down. Her sweat tests were 79 and 93 respectively. No argument after that.

 

[jdprecious]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JORDYSMOM</b></i>
We were told it was allergies and asthma blah blah blah!
Stacey</end quote>

Exactly what we were told as well. I knew better than that bc all of the durn asthma and allergy medication was NOT making her any better. She was dx at 3 yrs old and I had told the docs for a year and a half what *I thought* it was, only to be shot down. Her sweat tests were 79 and 93 respectively. No argument after that.

 

[jdprecious]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JORDYSMOM</b></i>
We were told it was allergies and asthma blah blah blah!
Stacey</end quote>

Exactly what we were told as well. I knew better than that bc all of the durn asthma and allergy medication was NOT making her any better. She was dx at 3 yrs old and I had told the docs for a year and a half what *I thought* it was, only to be shot down. Her sweat tests were 79 and 93 respectively. No argument after that.

 

[AlexsMom]

Thank-you all of you-baby woke up last nite at 2:30 a.m. retracting and dry cough-ended up w/2 brthng.trmnts. and she coughed it up until 6:30 this morn-we had to be at hospital at 8:45 this morn.for upper GI ordered by gastro.doc-results-normal- No big suprise there? While I was there I got a copy of her Aug.7th CT scan-Findings#1- small cyst upper spleen (I have no knowledge of this until now)#2-streaky linear areas of atelectasis in both lungs. #3-Slightly larger areas of opacification in left upper lung and left lower lung-may be atelectasis or infiltrate. What the hell is infiltrate?-Sorry, but I HAVE HAD NO SLEEP. I'm calling her pulomonologist now req.Ambry Amplified, yesterday I asked him if he thought we should run it-as I told you he said no-nurse told me there "are a lot of things that act like CF" I said, "well, what are they,you guys should know-not me!" Dammnit! We are w/ Nemours Childrens's Hospital in Pensacola Florida-they are an accredited CF care center.

 

[AlexsMom]

Thank-you all of you-baby woke up last nite at 2:30 a.m. retracting and dry cough-ended up w/2 brthng.trmnts. and she coughed it up until 6:30 this morn-we had to be at hospital at 8:45 this morn.for upper GI ordered by gastro.doc-results-normal- No big suprise there? While I was there I got a copy of her Aug.7th CT scan-Findings#1- small cyst upper spleen (I have no knowledge of this until now)#2-streaky linear areas of atelectasis in both lungs. #3-Slightly larger areas of opacification in left upper lung and left lower lung-may be atelectasis or infiltrate. What the hell is infiltrate?-Sorry, but I HAVE HAD NO SLEEP. I'm calling her pulomonologist now req.Ambry Amplified, yesterday I asked him if he thought we should run it-as I told you he said no-nurse told me there "are a lot of things that act like CF" I said, "well, what are they,you guys should know-not me!" Dammnit! We are w/ Nemours Childrens's Hospital in Pensacola Florida-they are an accredited CF care center.

 

[AlexsMom]

Thank-you all of you-baby woke up last nite at 2:30 a.m. retracting and dry cough-ended up w/2 brthng.trmnts. and she coughed it up until 6:30 this morn-we had to be at hospital at 8:45 this morn.for upper GI ordered by gastro.doc-results-normal- No big suprise there? While I was there I got a copy of her Aug.7th CT scan-Findings#1- small cyst upper spleen (I have no knowledge of this until now)#2-streaky linear areas of atelectasis in both lungs. #3-Slightly larger areas of opacification in left upper lung and left lower lung-may be atelectasis or infiltrate. What the hell is infiltrate?-Sorry, but I HAVE HAD NO SLEEP. I'm calling her pulomonologist now req.Ambry Amplified, yesterday I asked him if he thought we should run it-as I told you he said no-nurse told me there "are a lot of things that act like CF" I said, "well, what are they,you guys should know-not me!" Dammnit! We are w/ Nemours Childrens's Hospital in Pensacola Florida-they are an accredited CF care center.

 

[AlexsMom]

Thank-you all of you-baby woke up last nite at 2:30 a.m. retracting and dry cough-ended up w/2 brthng.trmnts. and she coughed it up until 6:30 this morn-we had to be at hospital at 8:45 this morn.for upper GI ordered by gastro.doc-results-normal- No big suprise there? While I was there I got a copy of her Aug.7th CT scan-Findings#1- small cyst upper spleen (I have no knowledge of this until now)#2-streaky linear areas of atelectasis in both lungs. #3-Slightly larger areas of opacification in left upper lung and left lower lung-may be atelectasis or infiltrate. What the hell is infiltrate?-Sorry, but I HAVE HAD NO SLEEP. I'm calling her pulomonologist now req.Ambry Amplified, yesterday I asked him if he thought we should run it-as I told you he said no-nurse told me there "are a lot of things that act like CF" I said, "well, what are they,you guys should know-not me!" Dammnit! We are w/ Nemours Childrens's Hospital in Pensacola Florida-they are an accredited CF care center.

 

[AlexsMom]

Thank-you all of you-baby woke up last nite at 2:30 a.m. retracting and dry cough-ended up w/2 brthng.trmnts. and she coughed it up until 6:30 this morn-we had to be at hospital at 8:45 this morn.for upper GI ordered by gastro.doc-results-normal- No big suprise there? While I was there I got a copy of her Aug.7th CT scan-Findings#1- small cyst upper spleen (I have no knowledge of this until now)#2-streaky linear areas of atelectasis in both lungs. #3-Slightly larger areas of opacification in left upper lung and left lower lung-may be atelectasis or infiltrate. What the hell is infiltrate?-Sorry, but I HAVE HAD NO SLEEP. I'm calling her pulomonologist now req.Ambry Amplified, yesterday I asked him if he thought we should run it-as I told you he said no-nurse told me there "are a lot of things that act like CF" I said, "well, what are they,you guys should know-not me!" Dammnit! We are w/ Nemours Childrens's Hospital in Pensacola Florida-they are an accredited CF care center.

 

[AlexsMom]

I knew I was at an accredited CF center,I checked the list you gave me-my pulmo.IS the director. I had already called them,but they are out to lunch.He has an excell.reputation-they have been really patient w/me- I call amost every day w/some new hypothesis- am I crazy ??? Any involvement w/CF and cysts on spleen? I have a feeling there is. Do you guys still think I should demand the Ambry-I'm w/an accredited center,my doc.is the head guy, ...........

 

[AlexsMom]

I knew I was at an accredited CF center,I checked the list you gave me-my pulmo.IS the director. I had already called them,but they are out to lunch.He has an excell.reputation-they have been really patient w/me- I call amost every day w/some new hypothesis- am I crazy ??? Any involvement w/CF and cysts on spleen? I have a feeling there is. Do you guys still think I should demand the Ambry-I'm w/an accredited center,my doc.is the head guy, ...........

 

[AlexsMom]

I knew I was at an accredited CF center,I checked the list you gave me-my pulmo.IS the director. I had already called them,but they are out to lunch.He has an excell.reputation-they have been really patient w/me- I call amost every day w/some new hypothesis- am I crazy ??? Any involvement w/CF and cysts on spleen? I have a feeling there is. Do you guys still think I should demand the Ambry-I'm w/an accredited center,my doc.is the head guy, ...........

 

[AlexsMom]

I knew I was at an accredited CF center,I checked the list you gave me-my pulmo.IS the director. I had already called them,but they are out to lunch.He has an excell.reputation-they have been really patient w/me- I call amost every day w/some new hypothesis- am I crazy ??? Any involvement w/CF and cysts on spleen? I have a feeling there is. Do you guys still think I should demand the Ambry-I'm w/an accredited center,my doc.is the head guy, ...........

 

[AlexsMom]

I knew I was at an accredited CF center,I checked the list you gave me-my pulmo.IS the director. I had already called them,but they are out to lunch.He has an excell.reputation-they have been really patient w/me- I call amost every day w/some new hypothesis- am I crazy ??? Any involvement w/CF and cysts on spleen? I have a feeling there is. Do you guys still think I should demand the Ambry-I'm w/an accredited center,my doc.is the head guy, ...........

 

[Alyssa]

Yes I do think you should still demand the full test -- what does the doctor care? He isn't paying for it... order the damn thing so you can get some rest!

I wouldn't be too happy with the nurses statement of "there are a lot of other things that can act like CF".... sure, that could be true, but why do they refuse to rule out for sure if it is CF before making that statement.... ahhhhh hello......<b>CF can act an awful lot like CF too !!!!!</b>

Keep up the good work mom!

Oh, PS, try not to get too worked up about seeing the report on the CT until you've been able to go over it with the doctor -- a lot of times, the way things get worded by the radiologist make it sound far worse than it really is. BUT, it's always good to read those things because it keeps you informed & educated. I'll go see what I can find out for you about infiltrate. I do know that when I saw "atelectasis and some other term (I forget what now) on my son's CT scan I asked the nurse why nobody mentioned it and she said it was very mild -- that everyone (people without any lung problems or CF) will show a small amount of atelectasis on a CT scan -- so that made me feel better.

 

[Alyssa]

Yes I do think you should still demand the full test -- what does the doctor care? He isn't paying for it... order the damn thing so you can get some rest!

I wouldn't be too happy with the nurses statement of "there are a lot of other things that can act like CF".... sure, that could be true, but why do they refuse to rule out for sure if it is CF before making that statement.... ahhhhh hello......<b>CF can act an awful lot like CF too !!!!!</b>

Keep up the good work mom!

Oh, PS, try not to get too worked up about seeing the report on the CT until you've been able to go over it with the doctor -- a lot of times, the way things get worded by the radiologist make it sound far worse than it really is. BUT, it's always good to read those things because it keeps you informed & educated. I'll go see what I can find out for you about infiltrate. I do know that when I saw "atelectasis and some other term (I forget what now) on my son's CT scan I asked the nurse why nobody mentioned it and she said it was very mild -- that everyone (people without any lung problems or CF) will show a small amount of atelectasis on a CT scan -- so that made me feel better.

 

[Alyssa]

Yes I do think you should still demand the full test -- what does the doctor care? He isn't paying for it... order the damn thing so you can get some rest!

I wouldn't be too happy with the nurses statement of "there are a lot of other things that can act like CF".... sure, that could be true, but why do they refuse to rule out for sure if it is CF before making that statement.... ahhhhh hello......<b>CF can act an awful lot like CF too !!!!!</b>

Keep up the good work mom!

Oh, PS, try not to get too worked up about seeing the report on the CT until you've been able to go over it with the doctor -- a lot of times, the way things get worded by the radiologist make it sound far worse than it really is. BUT, it's always good to read those things because it keeps you informed & educated. I'll go see what I can find out for you about infiltrate. I do know that when I saw "atelectasis and some other term (I forget what now) on my son's CT scan I asked the nurse why nobody mentioned it and she said it was very mild -- that everyone (people without any lung problems or CF) will show a small amount of atelectasis on a CT scan -- so that made me feel better.

 

[Alyssa]

Yes I do think you should still demand the full test -- what does the doctor care? He isn't paying for it... order the damn thing so you can get some rest!

I wouldn't be too happy with the nurses statement of "there are a lot of other things that can act like CF".... sure, that could be true, but why do they refuse to rule out for sure if it is CF before making that statement.... ahhhhh hello......<b>CF can act an awful lot like CF too !!!!!</b>

Keep up the good work mom!

Oh, PS, try not to get too worked up about seeing the report on the CT until you've been able to go over it with the doctor -- a lot of times, the way things get worded by the radiologist make it sound far worse than it really is. BUT, it's always good to read those things because it keeps you informed & educated. I'll go see what I can find out for you about infiltrate. I do know that when I saw "atelectasis and some other term (I forget what now) on my son's CT scan I asked the nurse why nobody mentioned it and she said it was very mild -- that everyone (people without any lung problems or CF) will show a small amount of atelectasis on a CT scan -- so that made me feel better.

 

[Alyssa]

Yes I do think you should still demand the full test -- what does the doctor care? He isn't paying for it... order the damn thing so you can get some rest!

I wouldn't be too happy with the nurses statement of "there are a lot of other things that can act like CF".... sure, that could be true, but why do they refuse to rule out for sure if it is CF before making that statement.... ahhhhh hello......<b>CF can act an awful lot like CF too !!!!!</b>

Keep up the good work mom!

Oh, PS, try not to get too worked up about seeing the report on the CT until you've been able to go over it with the doctor -- a lot of times, the way things get worded by the radiologist make it sound far worse than it really is. BUT, it's always good to read those things because it keeps you informed & educated. I'll go see what I can find out for you about infiltrate. I do know that when I saw "atelectasis and some other term (I forget what now) on my son's CT scan I asked the nurse why nobody mentioned it and she said it was very mild -- that everyone (people without any lung problems or CF) will show a small amount of atelectasis on a CT scan -- so that made me feel better.