How To Handle Different Dr Opinions

[dream2live]

I understand where you are coming from. My local pulmonary doctor has me on mucamist and Zithromax. My CF doctor at Shands wanted me on Pulmozyme instead of mucamist. Pulmozyme makes me lose my voice and I dont see a difference, so I switched back to mucamist and it does help with coughing up the mucas. I am 39 years old, and in the past 2 years I have become my own patient advocate. Just because my doctors think this or that is better, I ask questions, etc. You do what YOU think is best for your child, especially if you see results/improvements, etc. You and I know more than some doctors.

 

[dream2live]

I understand where you are coming from. My local pulmonary doctor has me on mucamist and Zithromax. My CF doctor at Shands wanted me on Pulmozyme instead of mucamist. Pulmozyme makes me lose my voice and I dont see a difference, so I switched back to mucamist and it does help with coughing up the mucas. I am 39 years old, and in the past 2 years I have become my own patient advocate. Just because my doctors think this or that is better, I ask questions, etc. You do what YOU think is best for your child, especially if you see results/improvements, etc. You and I know more than some doctors.

 

[dream2live]

I understand where you are coming from. My local pulmonary doctor has me on mucamist and Zithromax. My CF doctor at Shands wanted me on Pulmozyme instead of mucamist. Pulmozyme makes me lose my voice and I dont see a difference, so I switched back to mucamist and it does help with coughing up the mucas. I am 39 years old, and in the past 2 years I have become my own patient advocate. Just because my doctors think this or that is better, I ask questions, etc. You do what YOU think is best for your child, especially if you see results/improvements, etc. You and I know more than some doctors.

 

[dream2live]

I understand where you are coming from. My local pulmonary doctor has me on mucamist and Zithromax. My CF doctor at Shands wanted me on Pulmozyme instead of mucamist. Pulmozyme makes me lose my voice and I dont see a difference, so I switched back to mucamist and it does help with coughing up the mucas. I am 39 years old, and in the past 2 years I have become my own patient advocate. Just because my doctors think this or that is better, I ask questions, etc. You do what YOU think is best for your child, especially if you see results/improvements, etc. You and I know more than some doctors.

 

[dream2live]

I understand where you are coming from. My local pulmonary doctor has me on mucamist and Zithromax. My CF doctor at Shands wanted me on Pulmozyme instead of mucamist. Pulmozyme makes me lose my voice and I dont see a difference, so I switched back to mucamist and it does help with coughing up the mucas. I am 39 years old, and in the past 2 years I have become my own patient advocate. Just because my doctors think this or that is better, I ask questions, etc. You do what YOU think is best for your child, especially if you see results/improvements, etc. You and I know more than some doctors.

 

[sdelorenzo]

Hi Megan,
It is hard to have different cf drs giving their opinions. But I still do it. My kids regular dr seems a bit insulted that I have taken them to another clinic, but he was agreeable to some of the new requests. One of the them was starting my daughter on mucomyst three years ago. Sophia was often waking up a night coughing. So much so that she needed a treatment to stop. Mucomyst immediately ended that. Any time in the past three years I don't give her evening mucomyst treatment she wakes up coughing that night. Very interesting. So I very glad we got another opinion and other treatment ideas. I am taking my kids to a new clinic this summer. This clinic does cat scans of the lungs. I am a bit nervous about telling their regular cf dr about it. But I want him to have a copy of the ct scan.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

Hi Megan,
It is hard to have different cf drs giving their opinions. But I still do it. My kids regular dr seems a bit insulted that I have taken them to another clinic, but he was agreeable to some of the new requests. One of the them was starting my daughter on mucomyst three years ago. Sophia was often waking up a night coughing. So much so that she needed a treatment to stop. Mucomyst immediately ended that. Any time in the past three years I don't give her evening mucomyst treatment she wakes up coughing that night. Very interesting. So I very glad we got another opinion and other treatment ideas. I am taking my kids to a new clinic this summer. This clinic does cat scans of the lungs. I am a bit nervous about telling their regular cf dr about it. But I want him to have a copy of the ct scan.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

Hi Megan,
It is hard to have different cf drs giving their opinions. But I still do it. My kids regular dr seems a bit insulted that I have taken them to another clinic, but he was agreeable to some of the new requests. One of the them was starting my daughter on mucomyst three years ago. Sophia was often waking up a night coughing. So much so that she needed a treatment to stop. Mucomyst immediately ended that. Any time in the past three years I don't give her evening mucomyst treatment she wakes up coughing that night. Very interesting. So I very glad we got another opinion and other treatment ideas. I am taking my kids to a new clinic this summer. This clinic does cat scans of the lungs. I am a bit nervous about telling their regular cf dr about it. But I want him to have a copy of the ct scan.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

Hi Megan,
It is hard to have different cf drs giving their opinions. But I still do it. My kids regular dr seems a bit insulted that I have taken them to another clinic, but he was agreeable to some of the new requests. One of the them was starting my daughter on mucomyst three years ago. Sophia was often waking up a night coughing. So much so that she needed a treatment to stop. Mucomyst immediately ended that. Any time in the past three years I don't give her evening mucomyst treatment she wakes up coughing that night. Very interesting. So I very glad we got another opinion and other treatment ideas. I am taking my kids to a new clinic this summer. This clinic does cat scans of the lungs. I am a bit nervous about telling their regular cf dr about it. But I want him to have a copy of the ct scan.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

Hi Megan,
<br />It is hard to have different cf drs giving their opinions. But I still do it. My kids regular dr seems a bit insulted that I have taken them to another clinic, but he was agreeable to some of the new requests. One of the them was starting my daughter on mucomyst three years ago. Sophia was often waking up a night coughing. So much so that she needed a treatment to stop. Mucomyst immediately ended that. Any time in the past three years I don't give her evening mucomyst treatment she wakes up coughing that night. Very interesting. So I very glad we got another opinion and other treatment ideas. I am taking my kids to a new clinic this summer. This clinic does cat scans of the lungs. I am a bit nervous about telling their regular cf dr about it. But I want him to have a copy of the ct scan.
<br />Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[Ratatosk]

We have two different doctors -- our primary CF doctor in the City, who is very proactive and our local cf clinic doctors who are more reactive and tend to sulk.

It does make things uncomfortable, especially when the local doctors try to talk us out of certain medications -- specifically antibiotics and they usually talk at length about antibiotic resistance. And early on they'd tell us that being the lungs aren't affected that we really didn't have to do CPT/nebs if we didn't feel like it. We do.

Our response has been that it seems to be working, lets not change things. Sometimes I feel that they're just waiting for something to happen, so they can say "I told you so" We feel it's important to try to establish a rapport with the local doctors, so we try not to make waves, but not at the expense of our child's health.

We're in the process of trying to find a local doctor who will "play nice" with others.

 

[Ratatosk]

We have two different doctors -- our primary CF doctor in the City, who is very proactive and our local cf clinic doctors who are more reactive and tend to sulk.

It does make things uncomfortable, especially when the local doctors try to talk us out of certain medications -- specifically antibiotics and they usually talk at length about antibiotic resistance. And early on they'd tell us that being the lungs aren't affected that we really didn't have to do CPT/nebs if we didn't feel like it. We do.

Our response has been that it seems to be working, lets not change things. Sometimes I feel that they're just waiting for something to happen, so they can say "I told you so" We feel it's important to try to establish a rapport with the local doctors, so we try not to make waves, but not at the expense of our child's health.

We're in the process of trying to find a local doctor who will "play nice" with others.

 

[Ratatosk]

We have two different doctors -- our primary CF doctor in the City, who is very proactive and our local cf clinic doctors who are more reactive and tend to sulk.

It does make things uncomfortable, especially when the local doctors try to talk us out of certain medications -- specifically antibiotics and they usually talk at length about antibiotic resistance. And early on they'd tell us that being the lungs aren't affected that we really didn't have to do CPT/nebs if we didn't feel like it. We do.

Our response has been that it seems to be working, lets not change things. Sometimes I feel that they're just waiting for something to happen, so they can say "I told you so" We feel it's important to try to establish a rapport with the local doctors, so we try not to make waves, but not at the expense of our child's health.

We're in the process of trying to find a local doctor who will "play nice" with others.

 

[Ratatosk]

We have two different doctors -- our primary CF doctor in the City, who is very proactive and our local cf clinic doctors who are more reactive and tend to sulk.

It does make things uncomfortable, especially when the local doctors try to talk us out of certain medications -- specifically antibiotics and they usually talk at length about antibiotic resistance. And early on they'd tell us that being the lungs aren't affected that we really didn't have to do CPT/nebs if we didn't feel like it. We do.

Our response has been that it seems to be working, lets not change things. Sometimes I feel that they're just waiting for something to happen, so they can say "I told you so" We feel it's important to try to establish a rapport with the local doctors, so we try not to make waves, but not at the expense of our child's health.

We're in the process of trying to find a local doctor who will "play nice" with others.

 

[Ratatosk]

We have two different doctors -- our primary CF doctor in the City, who is very proactive and our local cf clinic doctors who are more reactive and tend to sulk.
<br />
<br />It does make things uncomfortable, especially when the local doctors try to talk us out of certain medications -- specifically antibiotics and they usually talk at length about antibiotic resistance. And early on they'd tell us that being the lungs aren't affected that we really didn't have to do CPT/nebs if we didn't feel like it. We do.
<br />
<br />Our response has been that it seems to be working, lets not change things. Sometimes I feel that they're just waiting for something to happen, so they can say "I told you so" We feel it's important to try to establish a rapport with the local doctors, so we try not to make waves, but not at the expense of our child's health.
<br />
<br />We're in the process of trying to find a local doctor who will "play nice" with others.

 

[mneville]

Thanks for all the replies. I ask a ton of questions and I think this can be irritating to my current clinic- I think they think I am always trying to test their 'theories' and treatments. Aidan did do Mucomyst since we saw Warwick but our clinic wanted us to stop when he got sick. I think it had nothing to do with the Mucomyst but it all stemmed from his totally horrible sinuses. So I restarted it esp after taking him to a new Center where the doctor and Warwick are good friends and use similar treatments. This Doc prescribes it for all his patients from diagnosis.

I know our Center is doing what they think is best for Aidan. They think starting him on maintenance Zithromax will cause PA to grow sooner. It might, it might not? But right now Aidan' Staph is causing sinus infections every month even after two surgeries and he is totally miserable unless he's on Zithromax- it works great for him. Warwick doesn't usually do maintenance antibiotics, Dr Scanlin does. Our doc doesn't so I don't know what to do.

Megan

 

[mneville]

Thanks for all the replies. I ask a ton of questions and I think this can be irritating to my current clinic- I think they think I am always trying to test their 'theories' and treatments. Aidan did do Mucomyst since we saw Warwick but our clinic wanted us to stop when he got sick. I think it had nothing to do with the Mucomyst but it all stemmed from his totally horrible sinuses. So I restarted it esp after taking him to a new Center where the doctor and Warwick are good friends and use similar treatments. This Doc prescribes it for all his patients from diagnosis.

I know our Center is doing what they think is best for Aidan. They think starting him on maintenance Zithromax will cause PA to grow sooner. It might, it might not? But right now Aidan' Staph is causing sinus infections every month even after two surgeries and he is totally miserable unless he's on Zithromax- it works great for him. Warwick doesn't usually do maintenance antibiotics, Dr Scanlin does. Our doc doesn't so I don't know what to do.

Megan

 

[mneville]

Thanks for all the replies. I ask a ton of questions and I think this can be irritating to my current clinic- I think they think I am always trying to test their 'theories' and treatments. Aidan did do Mucomyst since we saw Warwick but our clinic wanted us to stop when he got sick. I think it had nothing to do with the Mucomyst but it all stemmed from his totally horrible sinuses. So I restarted it esp after taking him to a new Center where the doctor and Warwick are good friends and use similar treatments. This Doc prescribes it for all his patients from diagnosis.

I know our Center is doing what they think is best for Aidan. They think starting him on maintenance Zithromax will cause PA to grow sooner. It might, it might not? But right now Aidan' Staph is causing sinus infections every month even after two surgeries and he is totally miserable unless he's on Zithromax- it works great for him. Warwick doesn't usually do maintenance antibiotics, Dr Scanlin does. Our doc doesn't so I don't know what to do.

Megan

 

[mneville]

Thanks for all the replies. I ask a ton of questions and I think this can be irritating to my current clinic- I think they think I am always trying to test their 'theories' and treatments. Aidan did do Mucomyst since we saw Warwick but our clinic wanted us to stop when he got sick. I think it had nothing to do with the Mucomyst but it all stemmed from his totally horrible sinuses. So I restarted it esp after taking him to a new Center where the doctor and Warwick are good friends and use similar treatments. This Doc prescribes it for all his patients from diagnosis.

I know our Center is doing what they think is best for Aidan. They think starting him on maintenance Zithromax will cause PA to grow sooner. It might, it might not? But right now Aidan' Staph is causing sinus infections every month even after two surgeries and he is totally miserable unless he's on Zithromax- it works great for him. Warwick doesn't usually do maintenance antibiotics, Dr Scanlin does. Our doc doesn't so I don't know what to do.

Megan

 

[mneville]

Thanks for all the replies. I ask a ton of questions and I think this can be irritating to my current clinic- I think they think I am always trying to test their 'theories' and treatments. Aidan did do Mucomyst since we saw Warwick but our clinic wanted us to stop when he got sick. I think it had nothing to do with the Mucomyst but it all stemmed from his totally horrible sinuses. So I restarted it esp after taking him to a new Center where the doctor and Warwick are good friends and use similar treatments. This Doc prescribes it for all his patients from diagnosis.
<br />
<br />I know our Center is doing what they think is best for Aidan. They think starting him on maintenance Zithromax will cause PA to grow sooner. It might, it might not? But right now Aidan' Staph is causing sinus infections every month even after two surgeries and he is totally miserable unless he's on Zithromax- it works great for him. Warwick doesn't usually do maintenance antibiotics, Dr Scanlin does. Our doc doesn't so I don't know what to do.
<br />
<br />Megan