Diagnosis w/o seeing patient

auntcob · Feb 8, 2010

Has it been anyone's experience that the CF Center never actually sees the patient? Is this typical? Just curious--the lab did the sweat test and drew the blood and we have had phone communication with the nurse in the CF center, but they have never actually seen my son. Borderline sweat test; two benign mutations.

His last FEV1 for asthma was in the 60-80% range. I guess I would feel more comfortable with the no CF diagnosis if someone actually saw him.

Thanks for allowing me to vent.

auntcob · Feb 8, 2010

Has it been anyone's experience that the CF Center never actually sees the patient? Is this typical? Just curious--the lab did the sweat test and drew the blood and we have had phone communication with the nurse in the CF center, but they have never actually seen my son. Borderline sweat test; two benign mutations.

His last FEV1 for asthma was in the 60-80% range. I guess I would feel more comfortable with the no CF diagnosis if someone actually saw him.

Thanks for allowing me to vent.

auntcob · Feb 8, 2010

Has it been anyone's experience that the CF Center never actually sees the patient? Is this typical? Just curious--the lab did the sweat test and drew the blood and we have had phone communication with the nurse in the CF center, but they have never actually seen my son. Borderline sweat test; two benign mutations.

His last FEV1 for asthma was in the 60-80% range. I guess I would feel more comfortable with the no CF diagnosis if someone actually saw him.

Thanks for allowing me to vent.

auntcob · Feb 8, 2010

Has it been anyone's experience that the CF Center never actually sees the patient? Is this typical? Just curious--the lab did the sweat test and drew the blood and we have had phone communication with the nurse in the CF center, but they have never actually seen my son. Borderline sweat test; two benign mutations.

His last FEV1 for asthma was in the 60-80% range. I guess I would feel more comfortable with the no CF diagnosis if someone actually saw him.

Thanks for allowing me to vent.

auntcob · Feb 8, 2010

Has it been anyone's experience that the CF Center never actually sees the patient? Is this typical? Just curious--the lab did the sweat test and drew the blood and we have had phone communication with the nurse in the CF center, but they have never actually seen my son. Borderline sweat test; two benign mutations.
 
 His last FEV1 for asthma was in the 60-80% range. I guess I would feel more comfortable with the no CF diagnosis if someone actually saw him.
 
 Thanks for allowing me to vent.

hmw · Feb 8, 2010

Ummmm..... No, I would be COMPLETELY uncomfortable with that!! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> A fev1 that low, the digestive symptoms he is having, and the borderline sweat test results means he should have the appointment at the CF center, I think. If they don't want to see him, make an appointment somewhere else- with a fev1 like that and his other symptoms, the fact that they've left it to a phone call and not wanted to see him already does not inspire much trust in them!

'Benign' makes NO SENSE in the light of the fact that he is having SYMPTOMS. Someone else recently posted here about having a benign dx, and while I have trouble accepting that, at least her child is completely healthy. Your son is not- action is most definitely required.

Please vent anytime- and ask us ANYTHING you need!

hmw · Feb 8, 2010

Ummmm..... No, I would be COMPLETELY uncomfortable with that!! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> A fev1 that low, the digestive symptoms he is having, and the borderline sweat test results means he should have the appointment at the CF center, I think. If they don't want to see him, make an appointment somewhere else- with a fev1 like that and his other symptoms, the fact that they've left it to a phone call and not wanted to see him already does not inspire much trust in them!

'Benign' makes NO SENSE in the light of the fact that he is having SYMPTOMS. Someone else recently posted here about having a benign dx, and while I have trouble accepting that, at least her child is completely healthy. Your son is not- action is most definitely required.

Please vent anytime- and ask us ANYTHING you need!

hmw · Feb 8, 2010

Ummmm..... No, I would be COMPLETELY uncomfortable with that!! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> A fev1 that low, the digestive symptoms he is having, and the borderline sweat test results means he should have the appointment at the CF center, I think. If they don't want to see him, make an appointment somewhere else- with a fev1 like that and his other symptoms, the fact that they've left it to a phone call and not wanted to see him already does not inspire much trust in them!

'Benign' makes NO SENSE in the light of the fact that he is having SYMPTOMS. Someone else recently posted here about having a benign dx, and while I have trouble accepting that, at least her child is completely healthy. Your son is not- action is most definitely required.

Please vent anytime- and ask us ANYTHING you need!

hmw · Feb 8, 2010

Ummmm..... No, I would be COMPLETELY uncomfortable with that!! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> A fev1 that low, the digestive symptoms he is having, and the borderline sweat test results means he should have the appointment at the CF center, I think. If they don't want to see him, make an appointment somewhere else- with a fev1 like that and his other symptoms, the fact that they've left it to a phone call and not wanted to see him already does not inspire much trust in them!

'Benign' makes NO SENSE in the light of the fact that he is having SYMPTOMS. Someone else recently posted here about having a benign dx, and while I have trouble accepting that, at least her child is completely healthy. Your son is not- action is most definitely required.

Please vent anytime- and ask us ANYTHING you need!

hmw · Feb 8, 2010

Ummmm..... No, I would be COMPLETELY uncomfortable with that!! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> A fev1 that low, the digestive symptoms he is having, and the borderline sweat test results means he should have the appointment at the CF center, I think. If they don't want to see him, make an appointment somewhere else- with a fev1 like that and his other symptoms, the fact that they've left it to a phone call and not wanted to see him already does not inspire much trust in them!
 
 'Benign' makes NO SENSE in the light of the fact that he is having SYMPTOMS. Someone else recently posted here about having a benign dx, and while I have trouble accepting that, at least her child is completely healthy. Your son is not- action is most definitely required.
 
 Please vent anytime- and ask us ANYTHING you need!

auntcob · Feb 8, 2010

Dear harriet,

I appreciate all your wisdom. I am going to seek a second opinion. The closest CF centers are in the DC area and Pittsburgh--any recommendations?

THANKS!

Chris

auntcob · Feb 8, 2010

Dear harriet,

I appreciate all your wisdom. I am going to seek a second opinion. The closest CF centers are in the DC area and Pittsburgh--any recommendations?

THANKS!

Chris

auntcob · Feb 8, 2010

Dear harriet,

I appreciate all your wisdom. I am going to seek a second opinion. The closest CF centers are in the DC area and Pittsburgh--any recommendations?

THANKS!

Chris

auntcob · Feb 8, 2010

Dear harriet,

I appreciate all your wisdom. I am going to seek a second opinion. The closest CF centers are in the DC area and Pittsburgh--any recommendations?

THANKS!

Chris

auntcob · Feb 8, 2010

Dear harriet,
 
 I appreciate all your wisdom. I am going to seek a second opinion. The closest CF centers are in the DC area and Pittsburgh--any recommendations?
 
 THANKS!
 
 Chris

hmw · Feb 8, 2010