CHOP CF Center?

auntcob · Mar 6, 2010

Our experience with CHOP was not as great as the others who have posted but we did not use them to the extent they have. They did my son's sweat test (borderline) and drew the blood for his genetic screening. His results were interesting with one 5T variant mutation and another that in most people have been asymptomatic. When the very kind nurse called me with his results, she said "as far as we are concerned, he does not have Cf." They never saw him.

Based on the recommendation of family member who has a son with CF, we took him the their CF clinic. They did a thorough history review and a multitude of tests and looked at that information (esp.his chest x-ray and PFT results) in the context of his genetic results. They did diagnose him with a CF variant and started him on enzymes--which are doing their job. EVeryone seems to agree that diagnosing CF is a clinical decision and I don't think CHOP got that right.

auntcob · Mar 6, 2010

Our experience with CHOP was not as great as the others who have posted but we did not use them to the extent they have. They did my son's sweat test (borderline) and drew the blood for his genetic screening. His results were interesting with one 5T variant mutation and another that in most people have been asymptomatic. When the very kind nurse called me with his results, she said "as far as we are concerned, he does not have Cf." They never saw him.

Based on the recommendation of family member who has a son with CF, we took him the their CF clinic. They did a thorough history review and a multitude of tests and looked at that information (esp.his chest x-ray and PFT results) in the context of his genetic results. They did diagnose him with a CF variant and started him on enzymes--which are doing their job. EVeryone seems to agree that diagnosing CF is a clinical decision and I don't think CHOP got that right.

auntcob · Mar 6, 2010

Our experience with CHOP was not as great as the others who have posted but we did not use them to the extent they have. They did my son's sweat test (borderline) and drew the blood for his genetic screening. His results were interesting with one 5T variant mutation and another that in most people have been asymptomatic. When the very kind nurse called me with his results, she said "as far as we are concerned, he does not have Cf." They never saw him.

Based on the recommendation of family member who has a son with CF, we took him the their CF clinic. They did a thorough history review and a multitude of tests and looked at that information (esp.his chest x-ray and PFT results) in the context of his genetic results. They did diagnose him with a CF variant and started him on enzymes--which are doing their job. EVeryone seems to agree that diagnosing CF is a clinical decision and I don't think CHOP got that right.

auntcob · Mar 6, 2010

Our experience with CHOP was not as great as the others who have posted but we did not use them to the extent they have. They did my son's sweat test (borderline) and drew the blood for his genetic screening. His results were interesting with one 5T variant mutation and another that in most people have been asymptomatic. When the very kind nurse called me with his results, she said "as far as we are concerned, he does not have Cf." They never saw him.

Based on the recommendation of family member who has a son with CF, we took him the their CF clinic. They did a thorough history review and a multitude of tests and looked at that information (esp.his chest x-ray and PFT results) in the context of his genetic results. They did diagnose him with a CF variant and started him on enzymes--which are doing their job. EVeryone seems to agree that diagnosing CF is a clinical decision and I don't think CHOP got that right.

auntcob · Mar 6, 2010

Our experience with CHOP was not as great as the others who have posted but we did not use them to the extent they have. They did my son's sweat test (borderline) and drew the blood for his genetic screening. His results were interesting with one 5T variant mutation and another that in most people have been asymptomatic. When the very kind nurse called me with his results, she said "as far as we are concerned, he does not have Cf." They never saw him.
<br />
<br />Based on the recommendation of family member who has a son with CF, we took him the their CF clinic. They did a thorough history review and a multitude of tests and looked at that information (esp.his chest x-ray and PFT results) in the context of his genetic results. They did diagnose him with a CF variant and started him on enzymes--which are doing their job. EVeryone seems to agree that diagnosing CF is a clinical decision and I don't think CHOP got that right.

mneville · Mar 6, 2010

Thanks so much! We are always so impressed with them when Aidan is there for all his sinus surgeries. They are just so attentive to details which is quite different than our local hospital. Will they readily prescrive abx over the phone? Aidan requires them Frequently for sinus infections and our CF center does it right over the phone. Do they really have 500 patients and just one doctor for the CF ccenter?

Megan

mneville · Mar 6, 2010

Thanks so much! We are always so impressed with them when Aidan is there for all his sinus surgeries. They are just so attentive to details which is quite different than our local hospital. Will they readily prescrive abx over the phone? Aidan requires them Frequently for sinus infections and our CF center does it right over the phone. Do they really have 500 patients and just one doctor for the CF ccenter?

Megan

mneville · Mar 6, 2010

Thanks so much! We are always so impressed with them when Aidan is there for all his sinus surgeries. They are just so attentive to details which is quite different than our local hospital. Will they readily prescrive abx over the phone? Aidan requires them Frequently for sinus infections and our CF center does it right over the phone. Do they really have 500 patients and just one doctor for the CF ccenter?

Megan

mneville · Mar 6, 2010

Thanks so much! We are always so impressed with them when Aidan is there for all his sinus surgeries. They are just so attentive to details which is quite different than our local hospital. Will they readily prescrive abx over the phone? Aidan requires them Frequently for sinus infections and our CF center does it right over the phone. Do they really have 500 patients and just one doctor for the CF ccenter?

Megan

mneville · Mar 6, 2010

Thanks so much! We are always so impressed with them when Aidan is there for all his sinus surgeries. They are just so attentive to details which is quite different than our local hospital. Will they readily prescrive abx over the phone? Aidan requires them Frequently for sinus infections and our CF center does it right over the phone. Do they really have 500 patients and just one doctor for the CF ccenter?
<br />
<br />Megan

nicole781 · Mar 7, 2010