Second Opinions

JoshuasMom · Jun 10, 2008

My husband and I are contemplating bringing our 9 month old son to another clinic to get a second opinion, or rather a second plan of care, for him. We research, both by google and by reviewing these message boards daily, and feel that many of you are receiving a lot more helpful information from your clinics. Has anyone ever gone for this type of second opinion before? and what were your results?

Any information would be greatly appreciated.

Thank you

JoshuasMom · Jun 10, 2008

My husband and I are contemplating bringing our 9 month old son to another clinic to get a second opinion, or rather a second plan of care, for him. We research, both by google and by reviewing these message boards daily, and feel that many of you are receiving a lot more helpful information from your clinics. Has anyone ever gone for this type of second opinion before? and what were your results?

Any information would be greatly appreciated.

Thank you

JoshuasMom · Jun 10, 2008

My husband and I are contemplating bringing our 9 month old son to another clinic to get a second opinion, or rather a second plan of care, for him. We research, both by google and by reviewing these message boards daily, and feel that many of you are receiving a lot more helpful information from your clinics. Has anyone ever gone for this type of second opinion before? and what were your results?

Any information would be greatly appreciated.

Thank you

JoshuasMom · Jun 10, 2008

My husband and I are contemplating bringing our 9 month old son to another clinic to get a second opinion, or rather a second plan of care, for him. We research, both by google and by reviewing these message boards daily, and feel that many of you are receiving a lot more helpful information from your clinics. Has anyone ever gone for this type of second opinion before? and what were your results?

Any information would be greatly appreciated.

Thank you

JoshuasMom · Jun 10, 2008

My husband and I are contemplating bringing our 9 month old son to another clinic to get a second opinion, or rather a second plan of care, for him. We research, both by google and by reviewing these message boards daily, and feel that many of you are receiving a lot more helpful information from your clinics. Has anyone ever gone for this type of second opinion before? and what were your results?
 
 Any information would be greatly appreciated.
 
 Thank you

Sevenstars · Jun 10, 2008

I don't think many people get a "second opinion" in the traditional sense. Basically, if we are happy that our CF centers are doing a good job, then we stick with them and do what they think is best, even if it's not something we want to hear.

The only time we will change doctors is when we want to permanently change because we are very unhappy with our treatment. (the doctor doesn't care, the doctor is not reachable, the staff is unknowledgable... things like that)

If our doctors advised something like... a feeding tube, for example... well, no one wants to get that. But if we trusted him, we'd follow his advice anyway. We wouldn't rush off to get a 2nd opinion regarding it simply because it's something unpleasant.

Bascially I am asking if you are unhappy with the service your doc is providing, or just something they suggested. Did you think it was wrong or incorrect? etc. Tell us more. <img src="i/expressions/face-icon-small-smile.gif" border="0"> To be honest, if your son is only 9months old he probably (knock on wood) doesn't have too much CF involvement yet, so there isn't too much a doctor could advise anyway - so that might be the reason we seem to get "more advice", we simply have a lot more going on.

Oh and welcome to the site!

Sevenstars · Jun 10, 2008

I don't think many people get a "second opinion" in the traditional sense. Basically, if we are happy that our CF centers are doing a good job, then we stick with them and do what they think is best, even if it's not something we want to hear.

The only time we will change doctors is when we want to permanently change because we are very unhappy with our treatment. (the doctor doesn't care, the doctor is not reachable, the staff is unknowledgable... things like that)

If our doctors advised something like... a feeding tube, for example... well, no one wants to get that. But if we trusted him, we'd follow his advice anyway. We wouldn't rush off to get a 2nd opinion regarding it simply because it's something unpleasant.

Bascially I am asking if you are unhappy with the service your doc is providing, or just something they suggested. Did you think it was wrong or incorrect? etc. Tell us more. <img src="i/expressions/face-icon-small-smile.gif" border="0"> To be honest, if your son is only 9months old he probably (knock on wood) doesn't have too much CF involvement yet, so there isn't too much a doctor could advise anyway - so that might be the reason we seem to get "more advice", we simply have a lot more going on.

Oh and welcome to the site!

Sevenstars · Jun 10, 2008

I don't think many people get a "second opinion" in the traditional sense. Basically, if we are happy that our CF centers are doing a good job, then we stick with them and do what they think is best, even if it's not something we want to hear.

The only time we will change doctors is when we want to permanently change because we are very unhappy with our treatment. (the doctor doesn't care, the doctor is not reachable, the staff is unknowledgable... things like that)

If our doctors advised something like... a feeding tube, for example... well, no one wants to get that. But if we trusted him, we'd follow his advice anyway. We wouldn't rush off to get a 2nd opinion regarding it simply because it's something unpleasant.

Bascially I am asking if you are unhappy with the service your doc is providing, or just something they suggested. Did you think it was wrong or incorrect? etc. Tell us more. <img src="i/expressions/face-icon-small-smile.gif" border="0"> To be honest, if your son is only 9months old he probably (knock on wood) doesn't have too much CF involvement yet, so there isn't too much a doctor could advise anyway - so that might be the reason we seem to get "more advice", we simply have a lot more going on.

Oh and welcome to the site!

Sevenstars · Jun 10, 2008

I don't think many people get a "second opinion" in the traditional sense. Basically, if we are happy that our CF centers are doing a good job, then we stick with them and do what they think is best, even if it's not something we want to hear.

The only time we will change doctors is when we want to permanently change because we are very unhappy with our treatment. (the doctor doesn't care, the doctor is not reachable, the staff is unknowledgable... things like that)

If our doctors advised something like... a feeding tube, for example... well, no one wants to get that. But if we trusted him, we'd follow his advice anyway. We wouldn't rush off to get a 2nd opinion regarding it simply because it's something unpleasant.

Bascially I am asking if you are unhappy with the service your doc is providing, or just something they suggested. Did you think it was wrong or incorrect? etc. Tell us more. <img src="i/expressions/face-icon-small-smile.gif" border="0"> To be honest, if your son is only 9months old he probably (knock on wood) doesn't have too much CF involvement yet, so there isn't too much a doctor could advise anyway - so that might be the reason we seem to get "more advice", we simply have a lot more going on.

Oh and welcome to the site!

Sevenstars · Jun 10, 2008

I don't think many people get a "second opinion" in the traditional sense. Basically, if we are happy that our CF centers are doing a good job, then we stick with them and do what they think is best, even if it's not something we want to hear.
 
 The only time we will change doctors is when we want to permanently change because we are very unhappy with our treatment. (the doctor doesn't care, the doctor is not reachable, the staff is unknowledgable... things like that)
 
 If our doctors advised something like... a feeding tube, for example... well, no one wants to get that. But if we trusted him, we'd follow his advice anyway. We wouldn't rush off to get a 2nd opinion regarding it simply because it's something unpleasant.
 
 Bascially I am asking if you are unhappy with the service your doc is providing, or just something they suggested. Did you think it was wrong or incorrect? etc. Tell us more. <img src="i/expressions/face-icon-small-smile.gif" border="0"> To be honest, if your son is only 9months old he probably (knock on wood) doesn't have too much CF involvement yet, so there isn't too much a doctor could advise anyway - so that might be the reason we seem to get "more advice", we simply have a lot more going on.
 
 Oh and welcome to the site!

Rebjane · Jun 10, 2008

Nicole,

I think it's great your are trying to do what you think is best for your baby. Most definately, us moms and dads are the BEST advocates for our children and their health care needs; we know them best. I'm pretty sure several members on this site have done their research and been seen by other CF clinics/CF doc for their expertise and input. I have brought my daughter with CF to a larger CF center; for consultation. Every CF clinic is different, even though the CFF does have certain standards of care for the clinics for them to get accredidation. Some clinics focus on nutrition others focus more on lung health while some do it all. A CF doctor told me that if your primary CF clinic has issue with you going to a larger center ; that is their problem with their ego, if that clinic is confident in their care; it should not bother them<img src="i/expressions/face-icon-small-smile.gif" border="0"> It is important for good communication between parent and CF clinic...Let them know you want to be aggressive or proactive or what the case may be. I think some clinics take YOUR lead. CF care is time-consuming; so they may opt not to order a treamtnent because of the time it takes.. I DO think being proactive NOW will help your baby in the long run. You want a clinic that listens to your concerns. My daughter had a bad respiratory exacerbation when she was 2 that I brought her for her 2nd opnion for.. Our primary CF doc was not being aggressive enough and my daughter ended up with a PICC line and bronchscopy, the works. Our cinic and I are basically on the same page. they know my style and work with me. BTW, one of the BEST things I've done for my daughter is get her on Hypertonic saline nebs. I did the research; my daughter's CF doc ordered it...We work together. Sorry for the rant.

Rebjane · Jun 10, 2008

Nicole,

I think it's great your are trying to do what you think is best for your baby. Most definately, us moms and dads are the BEST advocates for our children and their health care needs; we know them best. I'm pretty sure several members on this site have done their research and been seen by other CF clinics/CF doc for their expertise and input. I have brought my daughter with CF to a larger CF center; for consultation. Every CF clinic is different, even though the CFF does have certain standards of care for the clinics for them to get accredidation. Some clinics focus on nutrition others focus more on lung health while some do it all. A CF doctor told me that if your primary CF clinic has issue with you going to a larger center ; that is their problem with their ego, if that clinic is confident in their care; it should not bother them<img src="i/expressions/face-icon-small-smile.gif" border="0"> It is important for good communication between parent and CF clinic...Let them know you want to be aggressive or proactive or what the case may be. I think some clinics take YOUR lead. CF care is time-consuming; so they may opt not to order a treamtnent because of the time it takes.. I DO think being proactive NOW will help your baby in the long run. You want a clinic that listens to your concerns. My daughter had a bad respiratory exacerbation when she was 2 that I brought her for her 2nd opnion for.. Our primary CF doc was not being aggressive enough and my daughter ended up with a PICC line and bronchscopy, the works. Our cinic and I are basically on the same page. they know my style and work with me. BTW, one of the BEST things I've done for my daughter is get her on Hypertonic saline nebs. I did the research; my daughter's CF doc ordered it...We work together. Sorry for the rant.

Rebjane · Jun 10, 2008

Nicole,

I think it's great your are trying to do what you think is best for your baby. Most definately, us moms and dads are the BEST advocates for our children and their health care needs; we know them best. I'm pretty sure several members on this site have done their research and been seen by other CF clinics/CF doc for their expertise and input. I have brought my daughter with CF to a larger CF center; for consultation. Every CF clinic is different, even though the CFF does have certain standards of care for the clinics for them to get accredidation. Some clinics focus on nutrition others focus more on lung health while some do it all. A CF doctor told me that if your primary CF clinic has issue with you going to a larger center ; that is their problem with their ego, if that clinic is confident in their care; it should not bother them<img src="i/expressions/face-icon-small-smile.gif" border="0"> It is important for good communication between parent and CF clinic...Let them know you want to be aggressive or proactive or what the case may be. I think some clinics take YOUR lead. CF care is time-consuming; so they may opt not to order a treamtnent because of the time it takes.. I DO think being proactive NOW will help your baby in the long run. You want a clinic that listens to your concerns. My daughter had a bad respiratory exacerbation when she was 2 that I brought her for her 2nd opnion for.. Our primary CF doc was not being aggressive enough and my daughter ended up with a PICC line and bronchscopy, the works. Our cinic and I are basically on the same page. they know my style and work with me. BTW, one of the BEST things I've done for my daughter is get her on Hypertonic saline nebs. I did the research; my daughter's CF doc ordered it...We work together. Sorry for the rant.

Rebjane · Jun 10, 2008

Nicole,

I think it's great your are trying to do what you think is best for your baby. Most definately, us moms and dads are the BEST advocates for our children and their health care needs; we know them best. I'm pretty sure several members on this site have done their research and been seen by other CF clinics/CF doc for their expertise and input. I have brought my daughter with CF to a larger CF center; for consultation. Every CF clinic is different, even though the CFF does have certain standards of care for the clinics for them to get accredidation. Some clinics focus on nutrition others focus more on lung health while some do it all. A CF doctor told me that if your primary CF clinic has issue with you going to a larger center ; that is their problem with their ego, if that clinic is confident in their care; it should not bother them<img src="i/expressions/face-icon-small-smile.gif" border="0"> It is important for good communication between parent and CF clinic...Let them know you want to be aggressive or proactive or what the case may be. I think some clinics take YOUR lead. CF care is time-consuming; so they may opt not to order a treamtnent because of the time it takes.. I DO think being proactive NOW will help your baby in the long run. You want a clinic that listens to your concerns. My daughter had a bad respiratory exacerbation when she was 2 that I brought her for her 2nd opnion for.. Our primary CF doc was not being aggressive enough and my daughter ended up with a PICC line and bronchscopy, the works. Our cinic and I are basically on the same page. they know my style and work with me. BTW, one of the BEST things I've done for my daughter is get her on Hypertonic saline nebs. I did the research; my daughter's CF doc ordered it...We work together. Sorry for the rant.

Rebjane · Jun 10, 2008

Nicole,

I think it's great your are trying to do what you think is best for your baby. Most definately, us moms and dads are the BEST advocates for our children and their health care needs; we know them best. I'm pretty sure several members on this site have done their research and been seen by other CF clinics/CF doc for their expertise and input. I have brought my daughter with CF to a larger CF center; for consultation. Every CF clinic is different, even though the CFF does have certain standards of care for the clinics for them to get accredidation. Some clinics focus on nutrition others focus more on lung health while some do it all. A CF doctor told me that if your primary CF clinic has issue with you going to a larger center ; that is their problem with their ego, if that clinic is confident in their care; it should not bother them<img src="i/expressions/face-icon-small-smile.gif" border="0"> It is important for good communication between parent and CF clinic...Let them know you want to be aggressive or proactive or what the case may be. I think some clinics take YOUR lead. CF care is time-consuming; so they may opt not to order a treamtnent because of the time it takes.. I DO think being proactive NOW will help your baby in the long run. You want a clinic that listens to your concerns. My daughter had a bad respiratory exacerbation when she was 2 that I brought her for her 2nd opnion for.. Our primary CF doc was not being aggressive enough and my daughter ended up with a PICC line and bronchscopy, the works. Our cinic and I are basically on the same page. they know my style and work with me. BTW, one of the BEST things I've done for my daughter is get her on Hypertonic saline nebs. I did the research; my daughter's CF doc ordered it...We work together. Sorry for the rant.

Ratatosk · Jun 10, 2008

Have you asked your doctor/clinic to try things and have been denied? Or been made to feel like an idiot?

We've had some issues with a couple of the doctors at the local CF clinic -- I refuse to go to one of them because I asked a questions about a liver test -- our primary CF doctor in the City mentioned a factor 2 test ?(I'd written it down to ask) and being that DS was due to have his regular labs -- vitamin levels, etc. I asked about it and the doctor MIMICKED me. Repeated Factor 2 several times in a high-pitched mocking voice and then said -- why in the WORLD would you want that. I just sat there with my mouth open, stunned that anyone would talk to me that way. Basically he was so threatened by the idea that we go to another clinic that he opted to make fun of me.

Ratatosk · Jun 10, 2008

Have you asked your doctor/clinic to try things and have been denied? Or been made to feel like an idiot?

We've had some issues with a couple of the doctors at the local CF clinic -- I refuse to go to one of them because I asked a questions about a liver test -- our primary CF doctor in the City mentioned a factor 2 test ?(I'd written it down to ask) and being that DS was due to have his regular labs -- vitamin levels, etc. I asked about it and the doctor MIMICKED me. Repeated Factor 2 several times in a high-pitched mocking voice and then said -- why in the WORLD would you want that. I just sat there with my mouth open, stunned that anyone would talk to me that way. Basically he was so threatened by the idea that we go to another clinic that he opted to make fun of me.

Ratatosk · Jun 10, 2008

Have you asked your doctor/clinic to try things and have been denied? Or been made to feel like an idiot?

We've had some issues with a couple of the doctors at the local CF clinic -- I refuse to go to one of them because I asked a questions about a liver test -- our primary CF doctor in the City mentioned a factor 2 test ?(I'd written it down to ask) and being that DS was due to have his regular labs -- vitamin levels, etc. I asked about it and the doctor MIMICKED me. Repeated Factor 2 several times in a high-pitched mocking voice and then said -- why in the WORLD would you want that. I just sat there with my mouth open, stunned that anyone would talk to me that way. Basically he was so threatened by the idea that we go to another clinic that he opted to make fun of me.

Ratatosk · Jun 10, 2008

Have you asked your doctor/clinic to try things and have been denied? Or been made to feel like an idiot?

We've had some issues with a couple of the doctors at the local CF clinic -- I refuse to go to one of them because I asked a questions about a liver test -- our primary CF doctor in the City mentioned a factor 2 test ?(I'd written it down to ask) and being that DS was due to have his regular labs -- vitamin levels, etc. I asked about it and the doctor MIMICKED me. Repeated Factor 2 several times in a high-pitched mocking voice and then said -- why in the WORLD would you want that. I just sat there with my mouth open, stunned that anyone would talk to me that way. Basically he was so threatened by the idea that we go to another clinic that he opted to make fun of me.

Ratatosk · Jun 10, 2008

Have you asked your doctor/clinic to try things and have been denied? Or been made to feel like an idiot?
 
 We've had some issues with a couple of the doctors at the local CF clinic -- I refuse to go to one of them because I asked a questions about a liver test -- our primary CF doctor in the City mentioned a factor 2 test ?(I'd written it down to ask) and being that DS was due to have his regular labs -- vitamin levels, etc. I asked about it and the doctor MIMICKED me. Repeated Factor 2 several times in a high-pitched mocking voice and then said -- why in the WORLD would you want that. I just sat there with my mouth open, stunned that anyone would talk to me that way. Basically he was so threatened by the idea that we go to another clinic that he opted to make fun of me.

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