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Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

S

saveferris2009

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>



eta: thank you for bringing this to our attention, Amy.

</end quote></div>

my pleasure. i don't post every single study I come across because it would fill up this forum constantly, so I have other studies on my blog that I update a few times a week if not daily.
 
S

saveferris2009

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>



eta: thank you for bringing this to our attention, Amy.

</end quote></div>

my pleasure. i don't post every single study I come across because it would fill up this forum constantly, so I have other studies on my blog that I update a few times a week if not daily.
 
S

saveferris2009

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>



eta: thank you for bringing this to our attention, Amy.

</end quote></div>

my pleasure. i don't post every single study I come across because it would fill up this forum constantly, so I have other studies on my blog that I update a few times a week if not daily.
 
S

saveferris2009

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>



eta: thank you for bringing this to our attention, Amy.

</end quote>

my pleasure. i don't post every single study I come across because it would fill up this forum constantly, so I have other studies on my blog that I update a few times a week if not daily.
 
S

saveferris2009

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>
<br />
<br />
<br />
<br />eta: thank you for bringing this to our attention, Amy.
<br />
<br /></end quote>
<br />
<br />my pleasure. i don't post every single study I come across because it would fill up this forum constantly, so I have other studies on my blog that I update a few times a week if not daily.
 
S

saveferris2009

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Buckeye</b></i>


I am totally pissed off at our CF Clinic though. When we found out he had Osteoporosis I called the clinic to let them know since I knew there is a link with CF. They couldn't understand why I was telling them. I actually had to explain it to them and still they acted like it was none of their concern.

</end quote></div>

Have you told the CFF about this? This might be a quality control issue with your center that the CFF needs to pay special attention to.

Who knows - by involving the CFF in the issue you may be helping to prevent this from happening to other CFer's....

<div class="FTQUOTE"><begin quote>
Thanks for posting it Amy!!!</end quote></div>

My pleasure
 
S

saveferris2009

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Buckeye</b></i>


I am totally pissed off at our CF Clinic though. When we found out he had Osteoporosis I called the clinic to let them know since I knew there is a link with CF. They couldn't understand why I was telling them. I actually had to explain it to them and still they acted like it was none of their concern.

</end quote></div>

Have you told the CFF about this? This might be a quality control issue with your center that the CFF needs to pay special attention to.

Who knows - by involving the CFF in the issue you may be helping to prevent this from happening to other CFer's....

<div class="FTQUOTE"><begin quote>
Thanks for posting it Amy!!!</end quote></div>

My pleasure
 
S

saveferris2009

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Buckeye</b></i>


I am totally pissed off at our CF Clinic though. When we found out he had Osteoporosis I called the clinic to let them know since I knew there is a link with CF. They couldn't understand why I was telling them. I actually had to explain it to them and still they acted like it was none of their concern.

</end quote></div>

Have you told the CFF about this? This might be a quality control issue with your center that the CFF needs to pay special attention to.

Who knows - by involving the CFF in the issue you may be helping to prevent this from happening to other CFer's....

<div class="FTQUOTE"><begin quote>
Thanks for posting it Amy!!!</end quote></div>

My pleasure
 
S

saveferris2009

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Buckeye</b></i>


I am totally pissed off at our CF Clinic though. When we found out he had Osteoporosis I called the clinic to let them know since I knew there is a link with CF. They couldn't understand why I was telling them. I actually had to explain it to them and still they acted like it was none of their concern.

</end quote>

Have you told the CFF about this? This might be a quality control issue with your center that the CFF needs to pay special attention to.

Who knows - by involving the CFF in the issue you may be helping to prevent this from happening to other CFer's....

<div class="FTQUOTE"><begin quote>
Thanks for posting it Amy!!!</end quote>

My pleasure
 
S

saveferris2009

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Buckeye</b></i>
<br />
<br />
<br />I am totally pissed off at our CF Clinic though. When we found out he had Osteoporosis I called the clinic to let them know since I knew there is a link with CF. They couldn't understand why I was telling them. I actually had to explain it to them and still they acted like it was none of their concern.
<br />
<br /></end quote>
<br />
<br />Have you told the CFF about this? This might be a quality control issue with your center that the CFF needs to pay special attention to.
<br />
<br />Who knows - by involving the CFF in the issue you may be helping to prevent this from happening to other CFer's....
<br />
<br /><div class="FTQUOTE"><begin quote>
<br />Thanks for posting it Amy!!!</end quote>
<br />
<br />My pleasure
<br />
 
K

kayleesgrandma

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

Wow Amy, I am going to hit my clinic with this on Wed. when Kaylee has her visit--it has never been mentioned to me before--THANKS FOR POSTING THIS!!!!

(*What do you think the odds are they won't know what I am talking about....since it's never been mentioned to me...)

Thank you for caring enough about us to come back and contribute and share your knowledge with us...
 
K

kayleesgrandma

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

Wow Amy, I am going to hit my clinic with this on Wed. when Kaylee has her visit--it has never been mentioned to me before--THANKS FOR POSTING THIS!!!!

(*What do you think the odds are they won't know what I am talking about....since it's never been mentioned to me...)

Thank you for caring enough about us to come back and contribute and share your knowledge with us...
 
K

kayleesgrandma

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

Wow Amy, I am going to hit my clinic with this on Wed. when Kaylee has her visit--it has never been mentioned to me before--THANKS FOR POSTING THIS!!!!

(*What do you think the odds are they won't know what I am talking about....since it's never been mentioned to me...)

Thank you for caring enough about us to come back and contribute and share your knowledge with us...
 
K

kayleesgrandma

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

Wow Amy, I am going to hit my clinic with this on Wed. when Kaylee has her visit--it has never been mentioned to me before--THANKS FOR POSTING THIS!!!!

(*What do you think the odds are they won't know what I am talking about....since it's never been mentioned to me...)

Thank you for caring enough about us to come back and contribute and share your knowledge with us...
 
K

kayleesgrandma

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

Wow Amy, I am going to hit my clinic with this on Wed. when Kaylee has her visit--it has never been mentioned to me before--THANKS FOR POSTING THIS!!!!
<br />
<br />(*What do you think the odds are they won't know what I am talking about....since it's never been mentioned to me...)
<br />
<br />Thank you for caring enough about us to come back and contribute and share your knowledge with us...
 
J

JORDYSMOM

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

Jordan's dx came because of a bone problem. We didn't know he had CF, but we knew he had bone issues, and were going to have to have a major spine surgery to correct some kyphosis. He was dx with CF by a pulmo doing a pre-surgery evaluation.

Anyway, I started reading everything I could get my hands on at that point. One of the things I read was that people with CF had bone density issues, and should be tested regularly for it. I asked the CF doc and the spine doc about the relationship between the two, and both said they were two separate issues. I never really bought into that, but I see more and more on this forum that there really is a correlation.

It's frustrating, because this is a real problem, and should be taken much more seriously by the clinics/docs. I hope that everyone will push this issue with their clinic.

Stacey
 
J

JORDYSMOM

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

Jordan's dx came because of a bone problem. We didn't know he had CF, but we knew he had bone issues, and were going to have to have a major spine surgery to correct some kyphosis. He was dx with CF by a pulmo doing a pre-surgery evaluation.

Anyway, I started reading everything I could get my hands on at that point. One of the things I read was that people with CF had bone density issues, and should be tested regularly for it. I asked the CF doc and the spine doc about the relationship between the two, and both said they were two separate issues. I never really bought into that, but I see more and more on this forum that there really is a correlation.

It's frustrating, because this is a real problem, and should be taken much more seriously by the clinics/docs. I hope that everyone will push this issue with their clinic.

Stacey
 
J

JORDYSMOM

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

Jordan's dx came because of a bone problem. We didn't know he had CF, but we knew he had bone issues, and were going to have to have a major spine surgery to correct some kyphosis. He was dx with CF by a pulmo doing a pre-surgery evaluation.

Anyway, I started reading everything I could get my hands on at that point. One of the things I read was that people with CF had bone density issues, and should be tested regularly for it. I asked the CF doc and the spine doc about the relationship between the two, and both said they were two separate issues. I never really bought into that, but I see more and more on this forum that there really is a correlation.

It's frustrating, because this is a real problem, and should be taken much more seriously by the clinics/docs. I hope that everyone will push this issue with their clinic.

Stacey
 
J

JORDYSMOM

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

Jordan's dx came because of a bone problem. We didn't know he had CF, but we knew he had bone issues, and were going to have to have a major spine surgery to correct some kyphosis. He was dx with CF by a pulmo doing a pre-surgery evaluation.

Anyway, I started reading everything I could get my hands on at that point. One of the things I read was that people with CF had bone density issues, and should be tested regularly for it. I asked the CF doc and the spine doc about the relationship between the two, and both said they were two separate issues. I never really bought into that, but I see more and more on this forum that there really is a correlation.

It's frustrating, because this is a real problem, and should be taken much more seriously by the clinics/docs. I hope that everyone will push this issue with their clinic.

Stacey
 
J

JORDYSMOM

New member
Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis

Jordan's dx came because of a bone problem. We didn't know he had CF, but we knew he had bone issues, and were going to have to have a major spine surgery to correct some kyphosis. He was dx with CF by a pulmo doing a pre-surgery evaluation.
<br />
<br />Anyway, I started reading everything I could get my hands on at that point. One of the things I read was that people with CF had bone density issues, and should be tested regularly for it. I asked the CF doc and the spine doc about the relationship between the two, and both said they were two separate issues. I never really bought into that, but I see more and more on this forum that there really is a correlation.
<br />
<br />It's frustrating, because this is a real problem, and should be taken much more seriously by the clinics/docs. I hope that everyone will push this issue with their clinic.
<br />
<br />Stacey
 
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