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

C

Cherylwithone

Guest
Nora, Nightwriter is correct on the asthma. My daughter has had that along with the cf. They always give her a neb after the first set of PFT's. They do this to check to see if it is the asthma kicking up. Also, there are other test for lung function. Sounds like he did'nt due enough. I would see someone else. Techni also plays a major role. That doctor was out of line to make the statements to you in front of your 9 yr old. HTS and Tobi is basic for almost all cfer's There are other drugs that can be used. I got the feeling he just did'nt want to bother.
Your her mom fight for her. If a doctor said that to me I would tell him to piss off.

I am just sorry that you had to sit there and listen to him with your daughter right there with you. Please keep us updated and never ever give up hope.

Cheryl mom to Malora 15 with cf
 
C

Cherylwithone

Guest
Nora, Nightwriter is correct on the asthma. My daughter has had that along with the cf. They always give her a neb after the first set of PFT's. They do this to check to see if it is the asthma kicking up. Also, there are other test for lung function. Sounds like he did'nt due enough. I would see someone else. Techni also plays a major role. That doctor was out of line to make the statements to you in front of your 9 yr old. HTS and Tobi is basic for almost all cfer's There are other drugs that can be used. I got the feeling he just did'nt want to bother.
Your her mom fight for her. If a doctor said that to me I would tell him to piss off.

I am just sorry that you had to sit there and listen to him with your daughter right there with you. Please keep us updated and never ever give up hope.

Cheryl mom to Malora 15 with cf
 
C

Cherylwithone

Guest
Nora, Nightwriter is correct on the asthma. My daughter has had that along with the cf. They always give her a neb after the first set of PFT's. They do this to check to see if it is the asthma kicking up. Also, there are other test for lung function. Sounds like he did'nt due enough. I would see someone else. Techni also plays a major role. That doctor was out of line to make the statements to you in front of your 9 yr old. HTS and Tobi is basic for almost all cfer's There are other drugs that can be used. I got the feeling he just did'nt want to bother.
Your her mom fight for her. If a doctor said that to me I would tell him to piss off.

I am just sorry that you had to sit there and listen to him with your daughter right there with you. Please keep us updated and never ever give up hope.

Cheryl mom to Malora 15 with cf
 
C

Cherylwithone

Guest
Nora, Nightwriter is correct on the asthma. My daughter has had that along with the cf. They always give her a neb after the first set of PFT's. They do this to check to see if it is the asthma kicking up. Also, there are other test for lung function. Sounds like he did'nt due enough. I would see someone else. Techni also plays a major role. That doctor was out of line to make the statements to you in front of your 9 yr old. HTS and Tobi is basic for almost all cfer's There are other drugs that can be used. I got the feeling he just did'nt want to bother.
Your her mom fight for her. If a doctor said that to me I would tell him to piss off.

I am just sorry that you had to sit there and listen to him with your daughter right there with you. Please keep us updated and never ever give up hope.

Cheryl mom to Malora 15 with cf
 
C

Cherylwithone

Guest
Nora, Nightwriter is correct on the asthma. My daughter has had that along with the cf. They always give her a neb after the first set of PFT's. They do this to check to see if it is the asthma kicking up. Also, there are other test for lung function. Sounds like he did'nt due enough. I would see someone else. Techni also plays a major role. That doctor was out of line to make the statements to you in front of your 9 yr old. HTS and Tobi is basic for almost all cfer's There are other drugs that can be used. I got the feeling he just did'nt want to bother.
<br />Your her mom fight for her. If a doctor said that to me I would tell him to piss off.
<br />
<br />I am just sorry that you had to sit there and listen to him with your daughter right there with you. Please keep us updated and never ever give up hope.
<br />
<br />Cheryl mom to Malora 15 with cf
 
J

JORDYSMOM

New member
I just want to strangle that doctor!! I would NEVER let that man near my child again. I'm just so sorry he did that to you and your child.

My son has an asthma component with his CF. He can have a decent O2 saturation, and still blow less than his normal. You might check out that angle, as Nightwriter suggested. Also, your daughter is young, and I think you have to take technique into consideration, as you mentioned.

Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
I just want to strangle that doctor!! I would NEVER let that man near my child again. I'm just so sorry he did that to you and your child.

My son has an asthma component with his CF. He can have a decent O2 saturation, and still blow less than his normal. You might check out that angle, as Nightwriter suggested. Also, your daughter is young, and I think you have to take technique into consideration, as you mentioned.

Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
I just want to strangle that doctor!! I would NEVER let that man near my child again. I'm just so sorry he did that to you and your child.

My son has an asthma component with his CF. He can have a decent O2 saturation, and still blow less than his normal. You might check out that angle, as Nightwriter suggested. Also, your daughter is young, and I think you have to take technique into consideration, as you mentioned.

Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
I just want to strangle that doctor!! I would NEVER let that man near my child again. I'm just so sorry he did that to you and your child.

My son has an asthma component with his CF. He can have a decent O2 saturation, and still blow less than his normal. You might check out that angle, as Nightwriter suggested. Also, your daughter is young, and I think you have to take technique into consideration, as you mentioned.

Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
I just want to strangle that doctor!! I would NEVER let that man near my child again. I'm just so sorry he did that to you and your child.
<br />
<br />My son has an asthma component with his CF. He can have a decent O2 saturation, and still blow less than his normal. You might check out that angle, as Nightwriter suggested. Also, your daughter is young, and I think you have to take technique into consideration, as you mentioned.
<br />
<br />Please keep us posted.
<br />
<br />Stacey
 
W

welshwitch

Guest
Hey.

just wanted to post to let you know that I understand. My doctors (and nurses, and social workers, etc.) have said equally idiotic things in front of me when I was young. They may think they're doing you a favor by being "realistic" but I don't think they're doing anyone any favors by giving you such morbid news, especially in front of your daughter. This is complete BS for them to give you such a negative outlook. One of the most crucial things for Dr's is to build up the patient and give positive and hopeful feedback. It is not because we are in denial, and it is not because we need pitying--but in order to get everyone to buy in on the treatment plan you can't present it in such a negative light. Arghh. Dump the doctor. Get one with a smidgen of a bedside manner. *Sorry for the rant, this is just a sensitive issue for me!*
 
W

welshwitch

Guest
Hey.

just wanted to post to let you know that I understand. My doctors (and nurses, and social workers, etc.) have said equally idiotic things in front of me when I was young. They may think they're doing you a favor by being "realistic" but I don't think they're doing anyone any favors by giving you such morbid news, especially in front of your daughter. This is complete BS for them to give you such a negative outlook. One of the most crucial things for Dr's is to build up the patient and give positive and hopeful feedback. It is not because we are in denial, and it is not because we need pitying--but in order to get everyone to buy in on the treatment plan you can't present it in such a negative light. Arghh. Dump the doctor. Get one with a smidgen of a bedside manner. *Sorry for the rant, this is just a sensitive issue for me!*
 
W

welshwitch

Guest
Hey.

just wanted to post to let you know that I understand. My doctors (and nurses, and social workers, etc.) have said equally idiotic things in front of me when I was young. They may think they're doing you a favor by being "realistic" but I don't think they're doing anyone any favors by giving you such morbid news, especially in front of your daughter. This is complete BS for them to give you such a negative outlook. One of the most crucial things for Dr's is to build up the patient and give positive and hopeful feedback. It is not because we are in denial, and it is not because we need pitying--but in order to get everyone to buy in on the treatment plan you can't present it in such a negative light. Arghh. Dump the doctor. Get one with a smidgen of a bedside manner. *Sorry for the rant, this is just a sensitive issue for me!*
 
W

welshwitch

Guest
Hey.

just wanted to post to let you know that I understand. My doctors (and nurses, and social workers, etc.) have said equally idiotic things in front of me when I was young. They may think they're doing you a favor by being "realistic" but I don't think they're doing anyone any favors by giving you such morbid news, especially in front of your daughter. This is complete BS for them to give you such a negative outlook. One of the most crucial things for Dr's is to build up the patient and give positive and hopeful feedback. It is not because we are in denial, and it is not because we need pitying--but in order to get everyone to buy in on the treatment plan you can't present it in such a negative light. Arghh. Dump the doctor. Get one with a smidgen of a bedside manner. *Sorry for the rant, this is just a sensitive issue for me!*
 
W

welshwitch

Guest
Hey.
<br />
<br />just wanted to post to let you know that I understand. My doctors (and nurses, and social workers, etc.) have said equally idiotic things in front of me when I was young. They may think they're doing you a favor by being "realistic" but I don't think they're doing anyone any favors by giving you such morbid news, especially in front of your daughter. This is complete BS for them to give you such a negative outlook. One of the most crucial things for Dr's is to build up the patient and give positive and hopeful feedback. It is not because we are in denial, and it is not because we need pitying--but in order to get everyone to buy in on the treatment plan you can't present it in such a negative light. Arghh. Dump the doctor. Get one with a smidgen of a bedside manner. *Sorry for the rant, this is just a sensitive issue for me!*
 
T

tammykrumrey

Guest
I am appauled that a doctor would say this in front of a little girl!! What bedside manners!!

Yes, get another opinion, and fast. Let your daughter know that this doctor doesn't know enough about her to make those type of comments and was just completely wrong. And then get her to a doctor who will treat her with the care and respect that she needs.

And I agree with checking out the asthma. Neither one of my girls have asthma, but I do know it can be a big factor for those who do. And I agree with the technique part as well. We just had that discussion with my girls CF dr. last week b/c I was concerned about my 9 year olds FEV1 being down a bit, and he said that he cannot rule out the fact that PFTs are dependent on technique and her age.

Good luck, and I am so sorry that this doctor was just an idiot!
 
T

tammykrumrey

Guest
I am appauled that a doctor would say this in front of a little girl!! What bedside manners!!

Yes, get another opinion, and fast. Let your daughter know that this doctor doesn't know enough about her to make those type of comments and was just completely wrong. And then get her to a doctor who will treat her with the care and respect that she needs.

And I agree with checking out the asthma. Neither one of my girls have asthma, but I do know it can be a big factor for those who do. And I agree with the technique part as well. We just had that discussion with my girls CF dr. last week b/c I was concerned about my 9 year olds FEV1 being down a bit, and he said that he cannot rule out the fact that PFTs are dependent on technique and her age.

Good luck, and I am so sorry that this doctor was just an idiot!
 
T

tammykrumrey

Guest
I am appauled that a doctor would say this in front of a little girl!! What bedside manners!!

Yes, get another opinion, and fast. Let your daughter know that this doctor doesn't know enough about her to make those type of comments and was just completely wrong. And then get her to a doctor who will treat her with the care and respect that she needs.

And I agree with checking out the asthma. Neither one of my girls have asthma, but I do know it can be a big factor for those who do. And I agree with the technique part as well. We just had that discussion with my girls CF dr. last week b/c I was concerned about my 9 year olds FEV1 being down a bit, and he said that he cannot rule out the fact that PFTs are dependent on technique and her age.

Good luck, and I am so sorry that this doctor was just an idiot!
 
T

tammykrumrey

Guest
I am appauled that a doctor would say this in front of a little girl!! What bedside manners!!

Yes, get another opinion, and fast. Let your daughter know that this doctor doesn't know enough about her to make those type of comments and was just completely wrong. And then get her to a doctor who will treat her with the care and respect that she needs.

And I agree with checking out the asthma. Neither one of my girls have asthma, but I do know it can be a big factor for those who do. And I agree with the technique part as well. We just had that discussion with my girls CF dr. last week b/c I was concerned about my 9 year olds FEV1 being down a bit, and he said that he cannot rule out the fact that PFTs are dependent on technique and her age.

Good luck, and I am so sorry that this doctor was just an idiot!
 
T

tammykrumrey

Guest
I am appauled that a doctor would say this in front of a little girl!! What bedside manners!!
<br />
<br />Yes, get another opinion, and fast. Let your daughter know that this doctor doesn't know enough about her to make those type of comments and was just completely wrong. And then get her to a doctor who will treat her with the care and respect that she needs.
<br />
<br />And I agree with checking out the asthma. Neither one of my girls have asthma, but I do know it can be a big factor for those who do. And I agree with the technique part as well. We just had that discussion with my girls CF dr. last week b/c I was concerned about my 9 year olds FEV1 being down a bit, and he said that he cannot rule out the fact that PFTs are dependent on technique and her age.
<br />
<br />Good luck, and I am so sorry that this doctor was just an idiot!
 
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