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CF Doc. gives negative survival rate for 9 yr. old,Do I get second opinion??

K

katlynnsmom

New member
Nightwriter,
No, you did not offend me in anyway. I was wanting advice. Please refer me to more info. on the ashtma issue and allergies. Which I did mention to her reg. doc. last week about being tested for allergies. His response was " I believe it is all CF ". And I know she is on asthma related med's. I just figured most cf patients are on them. I would appreciate any info. that you can give me.What things I need to do or get rid of in her environment. Thanks,
Nora
 
K

katlynnsmom

New member
Nightwriter,
No, you did not offend me in anyway. I was wanting advice. Please refer me to more info. on the ashtma issue and allergies. Which I did mention to her reg. doc. last week about being tested for allergies. His response was " I believe it is all CF ". And I know she is on asthma related med's. I just figured most cf patients are on them. I would appreciate any info. that you can give me.What things I need to do or get rid of in her environment. Thanks,
Nora
 
K

katlynnsmom

New member
Nightwriter,
No, you did not offend me in anyway. I was wanting advice. Please refer me to more info. on the ashtma issue and allergies. Which I did mention to her reg. doc. last week about being tested for allergies. His response was " I believe it is all CF ". And I know she is on asthma related med's. I just figured most cf patients are on them. I would appreciate any info. that you can give me.What things I need to do or get rid of in her environment. Thanks,
Nora
 
K

katlynnsmom

New member
Nightwriter,
No, you did not offend me in anyway. I was wanting advice. Please refer me to more info. on the ashtma issue and allergies. Which I did mention to her reg. doc. last week about being tested for allergies. His response was " I believe it is all CF ". And I know she is on asthma related med's. I just figured most cf patients are on them. I would appreciate any info. that you can give me.What things I need to do or get rid of in her environment. Thanks,
Nora
 
K

katlynnsmom

New member
Nightwriter,
<br /> No, you did not offend me in anyway. I was wanting advice. Please refer me to more info. on the ashtma issue and allergies. Which I did mention to her reg. doc. last week about being tested for allergies. His response was " I believe it is all CF ". And I know she is on asthma related med's. I just figured most cf patients are on them. I would appreciate any info. that you can give me.What things I need to do or get rid of in her environment. Thanks,
<br /> Nora
 
A

Aspiemom

Guest
Nora, the CF center should have given you a Peak Flow Meter. You should be able to ask them for one.

I take it that you go to Birmingham? I was given a choice between UAB and Vanderbilt and chose Vandy because I heard they had more experience and a larger CF center. I've also heard from quite a few who weren't happy with the UAB CF center. I go to Vandy and I think it would be great for you to take your daughter there, even if only for a 2nd opinion. With the problems your daughter is facing this year, I think that would be very worth your while.

I absolutely wouldn't return to that dr., regardless. Your other dr. said you should keep the appt., but I don't see one dr. saying "don't see that dr." even if they are thinking it. I would not see that dr. again.

I'm so sorry for what you and your daughter have been going through. It sounds like a real ordeal and you sound like you are doing everything I would be doing, altho I would look further into the asthma component as Nightwriter said. I had a dr. tell me for years that mine was all CF and not asthma, only to find out at Johns Hopkins that I did have a strong asthma component. Some drs. have graduated by the skin of their teeth!
 
A

Aspiemom

Guest
Nora, the CF center should have given you a Peak Flow Meter. You should be able to ask them for one.

I take it that you go to Birmingham? I was given a choice between UAB and Vanderbilt and chose Vandy because I heard they had more experience and a larger CF center. I've also heard from quite a few who weren't happy with the UAB CF center. I go to Vandy and I think it would be great for you to take your daughter there, even if only for a 2nd opinion. With the problems your daughter is facing this year, I think that would be very worth your while.

I absolutely wouldn't return to that dr., regardless. Your other dr. said you should keep the appt., but I don't see one dr. saying "don't see that dr." even if they are thinking it. I would not see that dr. again.

I'm so sorry for what you and your daughter have been going through. It sounds like a real ordeal and you sound like you are doing everything I would be doing, altho I would look further into the asthma component as Nightwriter said. I had a dr. tell me for years that mine was all CF and not asthma, only to find out at Johns Hopkins that I did have a strong asthma component. Some drs. have graduated by the skin of their teeth!
 
A

Aspiemom

Guest
Nora, the CF center should have given you a Peak Flow Meter. You should be able to ask them for one.

I take it that you go to Birmingham? I was given a choice between UAB and Vanderbilt and chose Vandy because I heard they had more experience and a larger CF center. I've also heard from quite a few who weren't happy with the UAB CF center. I go to Vandy and I think it would be great for you to take your daughter there, even if only for a 2nd opinion. With the problems your daughter is facing this year, I think that would be very worth your while.

I absolutely wouldn't return to that dr., regardless. Your other dr. said you should keep the appt., but I don't see one dr. saying "don't see that dr." even if they are thinking it. I would not see that dr. again.

I'm so sorry for what you and your daughter have been going through. It sounds like a real ordeal and you sound like you are doing everything I would be doing, altho I would look further into the asthma component as Nightwriter said. I had a dr. tell me for years that mine was all CF and not asthma, only to find out at Johns Hopkins that I did have a strong asthma component. Some drs. have graduated by the skin of their teeth!
 
A

Aspiemom

Guest
Nora, the CF center should have given you a Peak Flow Meter. You should be able to ask them for one.

I take it that you go to Birmingham? I was given a choice between UAB and Vanderbilt and chose Vandy because I heard they had more experience and a larger CF center. I've also heard from quite a few who weren't happy with the UAB CF center. I go to Vandy and I think it would be great for you to take your daughter there, even if only for a 2nd opinion. With the problems your daughter is facing this year, I think that would be very worth your while.

I absolutely wouldn't return to that dr., regardless. Your other dr. said you should keep the appt., but I don't see one dr. saying "don't see that dr." even if they are thinking it. I would not see that dr. again.

I'm so sorry for what you and your daughter have been going through. It sounds like a real ordeal and you sound like you are doing everything I would be doing, altho I would look further into the asthma component as Nightwriter said. I had a dr. tell me for years that mine was all CF and not asthma, only to find out at Johns Hopkins that I did have a strong asthma component. Some drs. have graduated by the skin of their teeth!
 
A

Aspiemom

Guest
Nora, the CF center should have given you a Peak Flow Meter. You should be able to ask them for one.
<br />
<br />I take it that you go to Birmingham? I was given a choice between UAB and Vanderbilt and chose Vandy because I heard they had more experience and a larger CF center. I've also heard from quite a few who weren't happy with the UAB CF center. I go to Vandy and I think it would be great for you to take your daughter there, even if only for a 2nd opinion. With the problems your daughter is facing this year, I think that would be very worth your while.
<br />
<br />I absolutely wouldn't return to that dr., regardless. Your other dr. said you should keep the appt., but I don't see one dr. saying "don't see that dr." even if they are thinking it. I would not see that dr. again.
<br />
<br />I'm so sorry for what you and your daughter have been going through. It sounds like a real ordeal and you sound like you are doing everything I would be doing, altho I would look further into the asthma component as Nightwriter said. I had a dr. tell me for years that mine was all CF and not asthma, only to find out at Johns Hopkins that I did have a strong asthma component. Some drs. have graduated by the skin of their teeth!
 
K

katlynnsmom

New member
Apsie,
<br /> If you don't mind me asking....how do you treat your asthma. And who do you see at Vandy?
<br /> Thanks, Nora
 
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