Unidentified Bacteria

A

AnD

New member
Sounds like they may be doing the "He's doing good for a cfer" instead of "He's had a big drop in PFTs and feels bad compare to <i>his</i> baseline" thing- grrrrr...

I would insist that they do more to find out what is going on, what is causing this exaserbation, and get him in on the <i>right</i> combo of meds and do whatever changes in his day to day maintence routine to get him over this. Personally, if my PFTs changed that much, and my doctor told me to wait another month, I would pitch a fit and if they still didn't admit me, I'd be seriously considering a trip to the emergency room (at a slow time, on a slow day <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) or switching doctors or clinics if I could.

Yes, trust your instincts- you know your son! I hope he's feeling better soon!
 
A

AnD

New member
Sounds like they may be doing the "He's doing good for a cfer" instead of "He's had a big drop in PFTs and feels bad compare to <i>his</i> baseline" thing- grrrrr...

I would insist that they do more to find out what is going on, what is causing this exaserbation, and get him in on the <i>right</i> combo of meds and do whatever changes in his day to day maintence routine to get him over this. Personally, if my PFTs changed that much, and my doctor told me to wait another month, I would pitch a fit and if they still didn't admit me, I'd be seriously considering a trip to the emergency room (at a slow time, on a slow day <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) or switching doctors or clinics if I could.

Yes, trust your instincts- you know your son! I hope he's feeling better soon!
 
A

AnD

New member
Sounds like they may be doing the "He's doing good for a cfer" instead of "He's had a big drop in PFTs and feels bad compare to <i>his</i> baseline" thing- grrrrr...

I would insist that they do more to find out what is going on, what is causing this exaserbation, and get him in on the <i>right</i> combo of meds and do whatever changes in his day to day maintence routine to get him over this. Personally, if my PFTs changed that much, and my doctor told me to wait another month, I would pitch a fit and if they still didn't admit me, I'd be seriously considering a trip to the emergency room (at a slow time, on a slow day <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) or switching doctors or clinics if I could.

Yes, trust your instincts- you know your son! I hope he's feeling better soon!
 
A

AnD

New member
Sounds like they may be doing the "He's doing good for a cfer" instead of "He's had a big drop in PFTs and feels bad compare to <i>his</i> baseline" thing- grrrrr...

I would insist that they do more to find out what is going on, what is causing this exaserbation, and get him in on the <i>right</i> combo of meds and do whatever changes in his day to day maintence routine to get him over this. Personally, if my PFTs changed that much, and my doctor told me to wait another month, I would pitch a fit and if they still didn't admit me, I'd be seriously considering a trip to the emergency room (at a slow time, on a slow day <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) or switching doctors or clinics if I could.

Yes, trust your instincts- you know your son! I hope he's feeling better soon!
 
J

janddburke

New member
do you see a Dr. in a CF Center?
how far are you from another Center? nothing wrong with a second opinion. That's what I would do.
 
J

janddburke

New member
do you see a Dr. in a CF Center?
how far are you from another Center? nothing wrong with a second opinion. That's what I would do.
 
J

janddburke

New member
do you see a Dr. in a CF Center?
how far are you from another Center? nothing wrong with a second opinion. That's what I would do.
 
J

janddburke

New member
do you see a Dr. in a CF Center?
how far are you from another Center? nothing wrong with a second opinion. That's what I would do.
 
J

janddburke

New member
do you see a Dr. in a CF Center?
how far are you from another Center? nothing wrong with a second opinion. That's what I would do.
 
J

janddburke

New member
do you see a Dr. in a CF Center?
how far are you from another Center? nothing wrong with a second opinion. That's what I would do.
 
M

mom2lillian

New member
I agree with your motherly instincts and the previous comment that they are saying he is doing well 'for a cf'er'. I would not accept this. I would get a 2nd opinion from anotehr care center that is willing ot be more aggressive with treatments. Also, you mentioned he cultures aspergilis-has he had an IGE level drawn to check his IGE levels to ensure he does not have ABPA (allergic bronchopulmonary aspergillis)? Just wondering I have that and I know it was really complicating things for some tiem befroe the thought to check it. Additionally, is he giving a culture at a time when he is getting somethign good up to ensure a good result?
 
M

mom2lillian

New member
I agree with your motherly instincts and the previous comment that they are saying he is doing well 'for a cf'er'. I would not accept this. I would get a 2nd opinion from anotehr care center that is willing ot be more aggressive with treatments. Also, you mentioned he cultures aspergilis-has he had an IGE level drawn to check his IGE levels to ensure he does not have ABPA (allergic bronchopulmonary aspergillis)? Just wondering I have that and I know it was really complicating things for some tiem befroe the thought to check it. Additionally, is he giving a culture at a time when he is getting somethign good up to ensure a good result?
 
M

mom2lillian

New member
I agree with your motherly instincts and the previous comment that they are saying he is doing well 'for a cf'er'. I would not accept this. I would get a 2nd opinion from anotehr care center that is willing ot be more aggressive with treatments. Also, you mentioned he cultures aspergilis-has he had an IGE level drawn to check his IGE levels to ensure he does not have ABPA (allergic bronchopulmonary aspergillis)? Just wondering I have that and I know it was really complicating things for some tiem befroe the thought to check it. Additionally, is he giving a culture at a time when he is getting somethign good up to ensure a good result?
 
M

mom2lillian

New member
I agree with your motherly instincts and the previous comment that they are saying he is doing well 'for a cf'er'. I would not accept this. I would get a 2nd opinion from anotehr care center that is willing ot be more aggressive with treatments. Also, you mentioned he cultures aspergilis-has he had an IGE level drawn to check his IGE levels to ensure he does not have ABPA (allergic bronchopulmonary aspergillis)? Just wondering I have that and I know it was really complicating things for some tiem befroe the thought to check it. Additionally, is he giving a culture at a time when he is getting somethign good up to ensure a good result?
 
M

mom2lillian

New member
I agree with your motherly instincts and the previous comment that they are saying he is doing well 'for a cf'er'. I would not accept this. I would get a 2nd opinion from anotehr care center that is willing ot be more aggressive with treatments. Also, you mentioned he cultures aspergilis-has he had an IGE level drawn to check his IGE levels to ensure he does not have ABPA (allergic bronchopulmonary aspergillis)? Just wondering I have that and I know it was really complicating things for some tiem befroe the thought to check it. Additionally, is he giving a culture at a time when he is getting somethign good up to ensure a good result?
 
M

mom2lillian

New member
I agree with your motherly instincts and the previous comment that they are saying he is doing well 'for a cf'er'. I would not accept this. I would get a 2nd opinion from anotehr care center that is willing ot be more aggressive with treatments. Also, you mentioned he cultures aspergilis-has he had an IGE level drawn to check his IGE levels to ensure he does not have ABPA (allergic bronchopulmonary aspergillis)? Just wondering I have that and I know it was really complicating things for some tiem befroe the thought to check it. Additionally, is he giving a culture at a time when he is getting somethign good up to ensure a good result?
 
R

Ratatosk

Administrator
Staff member
Grrr!, good for a cfer reminds me of the time the CF doctor at the local clinic brushed aside my concerns about ds's cough when he was 3 months old -- told me he has CF, that's what they do. His primary CF doctor in the City was furious -- ds had Bronchitis. Go with your gut. Need to be proactive with your son's care.
 
R

Ratatosk

Administrator
Staff member
Grrr!, good for a cfer reminds me of the time the CF doctor at the local clinic brushed aside my concerns about ds's cough when he was 3 months old -- told me he has CF, that's what they do. His primary CF doctor in the City was furious -- ds had Bronchitis. Go with your gut. Need to be proactive with your son's care.
 
R

Ratatosk

Administrator
Staff member
Grrr!, good for a cfer reminds me of the time the CF doctor at the local clinic brushed aside my concerns about ds's cough when he was 3 months old -- told me he has CF, that's what they do. His primary CF doctor in the City was furious -- ds had Bronchitis. Go with your gut. Need to be proactive with your son's care.
 
R

Ratatosk

Administrator
Staff member
Grrr!, good for a cfer reminds me of the time the CF doctor at the local clinic brushed aside my concerns about ds's cough when he was 3 months old -- told me he has CF, that's what they do. His primary CF doctor in the City was furious -- ds had Bronchitis. Go with your gut. Need to be proactive with your son's care.
 
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