I have 2 w/ cf...Brent has had pneumonia 4x this yr...sinus surg ect and still seems to be getting sick...Kaley was on abx every other day last winter and they sd not to put her back on them again this winter however she has been on abx for the last month for crap...right now she has lots of fluid in her ears and is in so much pain...I feel like i need a 2nd opinion and i heard that the philly center was wonderful but someone on here posted not so much!!! where do i go? should i be more agressive w/ my kids health??? do i need a 2nd opinion??? i am so lost...any advice would help and i am willing to travel!!! we live in upstate ny..so nyc, CT would be fine...any suggesstions????
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CF center
- Thread starter 3gr8kids
- Start date
I have 2 w/ cf...Brent has had pneumonia 4x this yr...sinus surg ect and still seems to be getting sick...Kaley was on abx every other day last winter and they sd not to put her back on them again this winter however she has been on abx for the last month for crap...right now she has lots of fluid in her ears and is in so much pain...I feel like i need a 2nd opinion and i heard that the philly center was wonderful but someone on here posted not so much!!! where do i go? should i be more agressive w/ my kids health??? do i need a 2nd opinion??? i am so lost...any advice would help and i am willing to travel!!! we live in upstate ny..so nyc, CT would be fine...any suggesstions????
I have 2 w/ cf...Brent has had pneumonia 4x this yr...sinus surg ect and still seems to be getting sick...Kaley was on abx every other day last winter and they sd not to put her back on them again this winter however she has been on abx for the last month for crap...right now she has lots of fluid in her ears and is in so much pain...I feel like i need a 2nd opinion and i heard that the philly center was wonderful but someone on here posted not so much!!! where do i go? should i be more agressive w/ my kids health??? do i need a 2nd opinion??? i am so lost...any advice would help and i am willing to travel!!! we live in upstate ny..so nyc, CT would be fine...any suggesstions????
I have 2 w/ cf...Brent has had pneumonia 4x this yr...sinus surg ect and still seems to be getting sick...Kaley was on abx every other day last winter and they sd not to put her back on them again this winter however she has been on abx for the last month for crap...right now she has lots of fluid in her ears and is in so much pain...I feel like i need a 2nd opinion and i heard that the philly center was wonderful but someone on here posted not so much!!! where do i go? should i be more agressive w/ my kids health??? do i need a 2nd opinion??? i am so lost...any advice would help and i am willing to travel!!! we live in upstate ny..so nyc, CT would be fine...any suggesstions????
I have 2 w/ cf...Brent has had pneumonia 4x this yr...sinus surg ect and still seems to be getting sick...Kaley was on abx every other day last winter and they sd not to put her back on them again this winter however she has been on abx for the last month for crap...right now she has lots of fluid in her ears and is in so much pain...I feel like i need a 2nd opinion and i heard that the philly center was wonderful but someone on here posted not so much!!! where do i go? should i be more agressive w/ my kids health??? do i need a 2nd opinion??? i am so lost...any advice would help and i am willing to travel!!! we live in upstate ny..so nyc, CT would be fine...any suggesstions????
I don't have any suggestions regarding a new clinic, but it does sound like you should get another opinion. That you need a doctor who is more proactive than reactive.
Does your current clinic do cultures at each appointment to see what the kids might be growing? DS is 5 and his doctor doesn't want him to have a cough -- if he does, we're supposed to contact his office to determine a treatment plan, possibly abx.
We had similar issues with our local clinic. It's so frustrating dealing with them, plus stressing about our son's health... We're much more comfortable dealing with our primary doctor who is in the city about 250 miles away who is much more agressive. They want us to call if we have questions or concerns, unlike our local clinic who act as if I'm a hysterical mother --- that is IF they bother to call me back.
Does your current clinic do cultures at each appointment to see what the kids might be growing? DS is 5 and his doctor doesn't want him to have a cough -- if he does, we're supposed to contact his office to determine a treatment plan, possibly abx.
We had similar issues with our local clinic. It's so frustrating dealing with them, plus stressing about our son's health... We're much more comfortable dealing with our primary doctor who is in the city about 250 miles away who is much more agressive. They want us to call if we have questions or concerns, unlike our local clinic who act as if I'm a hysterical mother --- that is IF they bother to call me back.
I don't have any suggestions regarding a new clinic, but it does sound like you should get another opinion. That you need a doctor who is more proactive than reactive.
Does your current clinic do cultures at each appointment to see what the kids might be growing? DS is 5 and his doctor doesn't want him to have a cough -- if he does, we're supposed to contact his office to determine a treatment plan, possibly abx.
We had similar issues with our local clinic. It's so frustrating dealing with them, plus stressing about our son's health... We're much more comfortable dealing with our primary doctor who is in the city about 250 miles away who is much more agressive. They want us to call if we have questions or concerns, unlike our local clinic who act as if I'm a hysterical mother --- that is IF they bother to call me back.
Does your current clinic do cultures at each appointment to see what the kids might be growing? DS is 5 and his doctor doesn't want him to have a cough -- if he does, we're supposed to contact his office to determine a treatment plan, possibly abx.
We had similar issues with our local clinic. It's so frustrating dealing with them, plus stressing about our son's health... We're much more comfortable dealing with our primary doctor who is in the city about 250 miles away who is much more agressive. They want us to call if we have questions or concerns, unlike our local clinic who act as if I'm a hysterical mother --- that is IF they bother to call me back.
I don't have any suggestions regarding a new clinic, but it does sound like you should get another opinion. That you need a doctor who is more proactive than reactive.
Does your current clinic do cultures at each appointment to see what the kids might be growing? DS is 5 and his doctor doesn't want him to have a cough -- if he does, we're supposed to contact his office to determine a treatment plan, possibly abx.
We had similar issues with our local clinic. It's so frustrating dealing with them, plus stressing about our son's health... We're much more comfortable dealing with our primary doctor who is in the city about 250 miles away who is much more agressive. They want us to call if we have questions or concerns, unlike our local clinic who act as if I'm a hysterical mother --- that is IF they bother to call me back.
Does your current clinic do cultures at each appointment to see what the kids might be growing? DS is 5 and his doctor doesn't want him to have a cough -- if he does, we're supposed to contact his office to determine a treatment plan, possibly abx.
We had similar issues with our local clinic. It's so frustrating dealing with them, plus stressing about our son's health... We're much more comfortable dealing with our primary doctor who is in the city about 250 miles away who is much more agressive. They want us to call if we have questions or concerns, unlike our local clinic who act as if I'm a hysterical mother --- that is IF they bother to call me back.
I don't have any suggestions regarding a new clinic, but it does sound like you should get another opinion. That you need a doctor who is more proactive than reactive.
Does your current clinic do cultures at each appointment to see what the kids might be growing? DS is 5 and his doctor doesn't want him to have a cough -- if he does, we're supposed to contact his office to determine a treatment plan, possibly abx.
We had similar issues with our local clinic. It's so frustrating dealing with them, plus stressing about our son's health... We're much more comfortable dealing with our primary doctor who is in the city about 250 miles away who is much more agressive. They want us to call if we have questions or concerns, unlike our local clinic who act as if I'm a hysterical mother --- that is IF they bother to call me back.
Does your current clinic do cultures at each appointment to see what the kids might be growing? DS is 5 and his doctor doesn't want him to have a cough -- if he does, we're supposed to contact his office to determine a treatment plan, possibly abx.
We had similar issues with our local clinic. It's so frustrating dealing with them, plus stressing about our son's health... We're much more comfortable dealing with our primary doctor who is in the city about 250 miles away who is much more agressive. They want us to call if we have questions or concerns, unlike our local clinic who act as if I'm a hysterical mother --- that is IF they bother to call me back.
I don't have any suggestions regarding a new clinic, but it does sound like you should get another opinion. That you need a doctor who is more proactive than reactive.
<br />
<br />Does your current clinic do cultures at each appointment to see what the kids might be growing? DS is 5 and his doctor doesn't want him to have a cough -- if he does, we're supposed to contact his office to determine a treatment plan, possibly abx.
<br />
<br />We had similar issues with our local clinic. It's so frustrating dealing with them, plus stressing about our son's health... We're much more comfortable dealing with our primary doctor who is in the city about 250 miles away who is much more agressive. They want us to call if we have questions or concerns, unlike our local clinic who act as if I'm a hysterical mother --- that is IF they bother to call me back.
<br />
<br />Does your current clinic do cultures at each appointment to see what the kids might be growing? DS is 5 and his doctor doesn't want him to have a cough -- if he does, we're supposed to contact his office to determine a treatment plan, possibly abx.
<br />
<br />We had similar issues with our local clinic. It's so frustrating dealing with them, plus stressing about our son's health... We're much more comfortable dealing with our primary doctor who is in the city about 250 miles away who is much more agressive. They want us to call if we have questions or concerns, unlike our local clinic who act as if I'm a hysterical mother --- that is IF they bother to call me back.
S
sdelorenzo
Guest
Second opinions have been very helpful to my kids and to me in taking care of them. We have visited three other cf centers - Minnesota, Denver, and another one here in Houston.
I spoke a few times this summer to Dr. Ran Anbar of the Syracuse clinic. I was very impressed in our conversations and his ideas were on the more aggressive side which I prefer.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
I spoke a few times this summer to Dr. Ran Anbar of the Syracuse clinic. I was very impressed in our conversations and his ideas were on the more aggressive side which I prefer.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
S
sdelorenzo
Guest
Second opinions have been very helpful to my kids and to me in taking care of them. We have visited three other cf centers - Minnesota, Denver, and another one here in Houston.
I spoke a few times this summer to Dr. Ran Anbar of the Syracuse clinic. I was very impressed in our conversations and his ideas were on the more aggressive side which I prefer.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
I spoke a few times this summer to Dr. Ran Anbar of the Syracuse clinic. I was very impressed in our conversations and his ideas were on the more aggressive side which I prefer.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
S
sdelorenzo
Guest
Second opinions have been very helpful to my kids and to me in taking care of them. We have visited three other cf centers - Minnesota, Denver, and another one here in Houston.
I spoke a few times this summer to Dr. Ran Anbar of the Syracuse clinic. I was very impressed in our conversations and his ideas were on the more aggressive side which I prefer.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
I spoke a few times this summer to Dr. Ran Anbar of the Syracuse clinic. I was very impressed in our conversations and his ideas were on the more aggressive side which I prefer.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
S
sdelorenzo
Guest
Second opinions have been very helpful to my kids and to me in taking care of them. We have visited three other cf centers - Minnesota, Denver, and another one here in Houston.
I spoke a few times this summer to Dr. Ran Anbar of the Syracuse clinic. I was very impressed in our conversations and his ideas were on the more aggressive side which I prefer.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
I spoke a few times this summer to Dr. Ran Anbar of the Syracuse clinic. I was very impressed in our conversations and his ideas were on the more aggressive side which I prefer.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
S
sdelorenzo
Guest
Second opinions have been very helpful to my kids and to me in taking care of them. We have visited three other cf centers - Minnesota, Denver, and another one here in Houston.
<br />
<br />I spoke a few times this summer to Dr. Ran Anbar of the Syracuse clinic. I was very impressed in our conversations and his ideas were on the more aggressive side which I prefer.
<br />Sharon, mom of Sophia, 7 and Jack, 5 both with cf
<br />
<br />I spoke a few times this summer to Dr. Ran Anbar of the Syracuse clinic. I was very impressed in our conversations and his ideas were on the more aggressive side which I prefer.
<br />Sharon, mom of Sophia, 7 and Jack, 5 both with cf
M
Mommafirst
Guest
It sure does sound like your gorgeous kids are dealing with an awful lot lately.
I know the process of getting a second opinion is tough (you risk hurting the relationship you have with the current team, you have to get insurance approval, etc.) but if you are feeling that your kids are not being treated aggressively enough, I think you definitely should make the effort and take the risk.
One thing that has helped my DH and I make the really hard decisions around this disease is that we decided that all our choices and actions should reflect our future. <b>We really don't ever want to be at the end stage of this disease wishing we had done something different.</b> If you may regret someday NOT getting that second opinion, than use that feeling to find a new opinion today -- one that may really make life for your kids a bit better. (((HUGS)))
I know the process of getting a second opinion is tough (you risk hurting the relationship you have with the current team, you have to get insurance approval, etc.) but if you are feeling that your kids are not being treated aggressively enough, I think you definitely should make the effort and take the risk.
One thing that has helped my DH and I make the really hard decisions around this disease is that we decided that all our choices and actions should reflect our future. <b>We really don't ever want to be at the end stage of this disease wishing we had done something different.</b> If you may regret someday NOT getting that second opinion, than use that feeling to find a new opinion today -- one that may really make life for your kids a bit better. (((HUGS)))
M
Mommafirst
Guest
It sure does sound like your gorgeous kids are dealing with an awful lot lately.
I know the process of getting a second opinion is tough (you risk hurting the relationship you have with the current team, you have to get insurance approval, etc.) but if you are feeling that your kids are not being treated aggressively enough, I think you definitely should make the effort and take the risk.
One thing that has helped my DH and I make the really hard decisions around this disease is that we decided that all our choices and actions should reflect our future. <b>We really don't ever want to be at the end stage of this disease wishing we had done something different.</b> If you may regret someday NOT getting that second opinion, than use that feeling to find a new opinion today -- one that may really make life for your kids a bit better. (((HUGS)))
I know the process of getting a second opinion is tough (you risk hurting the relationship you have with the current team, you have to get insurance approval, etc.) but if you are feeling that your kids are not being treated aggressively enough, I think you definitely should make the effort and take the risk.
One thing that has helped my DH and I make the really hard decisions around this disease is that we decided that all our choices and actions should reflect our future. <b>We really don't ever want to be at the end stage of this disease wishing we had done something different.</b> If you may regret someday NOT getting that second opinion, than use that feeling to find a new opinion today -- one that may really make life for your kids a bit better. (((HUGS)))
M
Mommafirst
Guest
It sure does sound like your gorgeous kids are dealing with an awful lot lately.
I know the process of getting a second opinion is tough (you risk hurting the relationship you have with the current team, you have to get insurance approval, etc.) but if you are feeling that your kids are not being treated aggressively enough, I think you definitely should make the effort and take the risk.
One thing that has helped my DH and I make the really hard decisions around this disease is that we decided that all our choices and actions should reflect our future. <b>We really don't ever want to be at the end stage of this disease wishing we had done something different.</b> If you may regret someday NOT getting that second opinion, than use that feeling to find a new opinion today -- one that may really make life for your kids a bit better. (((HUGS)))
I know the process of getting a second opinion is tough (you risk hurting the relationship you have with the current team, you have to get insurance approval, etc.) but if you are feeling that your kids are not being treated aggressively enough, I think you definitely should make the effort and take the risk.
One thing that has helped my DH and I make the really hard decisions around this disease is that we decided that all our choices and actions should reflect our future. <b>We really don't ever want to be at the end stage of this disease wishing we had done something different.</b> If you may regret someday NOT getting that second opinion, than use that feeling to find a new opinion today -- one that may really make life for your kids a bit better. (((HUGS)))
M
Mommafirst
Guest
It sure does sound like your gorgeous kids are dealing with an awful lot lately.
I know the process of getting a second opinion is tough (you risk hurting the relationship you have with the current team, you have to get insurance approval, etc.) but if you are feeling that your kids are not being treated aggressively enough, I think you definitely should make the effort and take the risk.
One thing that has helped my DH and I make the really hard decisions around this disease is that we decided that all our choices and actions should reflect our future. <b>We really don't ever want to be at the end stage of this disease wishing we had done something different.</b> If you may regret someday NOT getting that second opinion, than use that feeling to find a new opinion today -- one that may really make life for your kids a bit better. (((HUGS)))
I know the process of getting a second opinion is tough (you risk hurting the relationship you have with the current team, you have to get insurance approval, etc.) but if you are feeling that your kids are not being treated aggressively enough, I think you definitely should make the effort and take the risk.
One thing that has helped my DH and I make the really hard decisions around this disease is that we decided that all our choices and actions should reflect our future. <b>We really don't ever want to be at the end stage of this disease wishing we had done something different.</b> If you may regret someday NOT getting that second opinion, than use that feeling to find a new opinion today -- one that may really make life for your kids a bit better. (((HUGS)))
M
Mommafirst
Guest
It sure does sound like your gorgeous kids are dealing with an awful lot lately.
<br />
<br />I know the process of getting a second opinion is tough (you risk hurting the relationship you have with the current team, you have to get insurance approval, etc.) but if you are feeling that your kids are not being treated aggressively enough, I think you definitely should make the effort and take the risk.
<br />
<br />One thing that has helped my DH and I make the really hard decisions around this disease is that we decided that all our choices and actions should reflect our future. <b>We really don't ever want to be at the end stage of this disease wishing we had done something different.</b> If you may regret someday NOT getting that second opinion, than use that feeling to find a new opinion today -- one that may really make life for your kids a bit better. (((HUGS)))
<br />
<br />
<br />
<br />I know the process of getting a second opinion is tough (you risk hurting the relationship you have with the current team, you have to get insurance approval, etc.) but if you are feeling that your kids are not being treated aggressively enough, I think you definitely should make the effort and take the risk.
<br />
<br />One thing that has helped my DH and I make the really hard decisions around this disease is that we decided that all our choices and actions should reflect our future. <b>We really don't ever want to be at the end stage of this disease wishing we had done something different.</b> If you may regret someday NOT getting that second opinion, than use that feeling to find a new opinion today -- one that may really make life for your kids a bit better. (((HUGS)))
<br />
<br />