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saveferris2009
05-03-2009, 11:35 AM
Are you getting your annual DEXA scans per CF Foundation recommendations?


<a target=_blank class=ftalternatingbarlinklarge href="http://snipurl.com/h9ko5">Severe bone demineratlization associated with higher mortality in kids with CF</a>Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis.

saveferris2009
05-03-2009, 11:35 AM
Are you getting your annual DEXA scans per CF Foundation recommendations?


<a target=_blank class=ftalternatingbarlinklarge href="http://snipurl.com/h9ko5">Severe bone demineratlization associated with higher mortality in kids with CF</a>Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis.

saveferris2009
05-03-2009, 11:35 AM
Are you getting your annual DEXA scans per CF Foundation recommendations?


<a target=_blank class=ftalternatingbarlinklarge href="http://snipurl.com/h9ko5">Severe bone demineratlization associated with higher mortality in kids with CF</a>Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis.

saveferris2009
05-03-2009, 11:35 AM
Are you getting your annual DEXA scans per CF Foundation recommendations?


<a target=_blank class=ftalternatingbarlinklarge href="http://snipurl.com/h9ko5">Severe bone demineratlization associated with higher mortality in kids with CF</a>Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis.

saveferris2009
05-03-2009, 11:35 AM
Are you getting your annual DEXA scans per CF Foundation recommendations?
<br />
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://snipurl.com/h9ko5">Severe bone demineratlization associated with higher mortality in kids with CF</a>Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis.

Jane
05-03-2009, 11:40 AM
I've never heard of this, but I will definately ask about it at next clinic. Thanks Amy!

Jane
05-03-2009, 11:40 AM
I've never heard of this, but I will definately ask about it at next clinic. Thanks Amy!

Jane
05-03-2009, 11:40 AM
I've never heard of this, but I will definately ask about it at next clinic. Thanks Amy!

Jane
05-03-2009, 11:40 AM
I've never heard of this, but I will definately ask about it at next clinic. Thanks Amy!

Jane
05-03-2009, 11:40 AM
I've never heard of this, but I will definately ask about it at next clinic. Thanks Amy!

TestifyToLove
05-03-2009, 12:24 PM
I've actually been very worried about this in M. His fat soluable vitamin levels have been dangerously low since 1/08 now. For the last 3 months, he has begun to complain about leg pain that centers in his thigh. And, a regular x-ray in Dec detected an anormality of that hip bone that has not yet been pursued.

We just recently adjusted his vitamins again and the CF clinic is going to re-test his levels to see if its working after 3 months. But, I think its time to start watching his bone density.

I'm amazed at how little attention and priority has been given to this issue. The GI (experienced with CF patients but not part of our CFF because we don't urrently have any GIs on staff there) doesn't do anything because its complicated. The CF doctors refer me to the nutritionalist. The nutritionalist is NOT a doctor and is clueless except to tell me to give him more vitamins. Neuro tells us his vitamin levels are low enough to cause siezures but since his psych has him on Depakote, they don't want to touch it.

The only person even trying to pay attention to this issue is the Heptalogist. He does it because he wants the best for M. But, he continually tells me this is a GI concern not Heptology.

I can only see the abstract to this study. Are you telling me that bone density is now associated with decreased longevity? Because I'm convinced at this point M has GOT to have decreased one density issues and I find that very concerning that it may be inpacting not just quality of life as I knew but now quantity as well.

That actually makes me very angry. Everyone acts like its *just* vitamins. But, this impacts his immune system. The myelin on his neurotransmitters, his ability to store calcium in his bones, his liver function, his heart and kidneys, and everything in between.

TestifyToLove
05-03-2009, 12:24 PM
I've actually been very worried about this in M. His fat soluable vitamin levels have been dangerously low since 1/08 now. For the last 3 months, he has begun to complain about leg pain that centers in his thigh. And, a regular x-ray in Dec detected an anormality of that hip bone that has not yet been pursued.

We just recently adjusted his vitamins again and the CF clinic is going to re-test his levels to see if its working after 3 months. But, I think its time to start watching his bone density.

I'm amazed at how little attention and priority has been given to this issue. The GI (experienced with CF patients but not part of our CFF because we don't urrently have any GIs on staff there) doesn't do anything because its complicated. The CF doctors refer me to the nutritionalist. The nutritionalist is NOT a doctor and is clueless except to tell me to give him more vitamins. Neuro tells us his vitamin levels are low enough to cause siezures but since his psych has him on Depakote, they don't want to touch it.

The only person even trying to pay attention to this issue is the Heptalogist. He does it because he wants the best for M. But, he continually tells me this is a GI concern not Heptology.

I can only see the abstract to this study. Are you telling me that bone density is now associated with decreased longevity? Because I'm convinced at this point M has GOT to have decreased one density issues and I find that very concerning that it may be inpacting not just quality of life as I knew but now quantity as well.

That actually makes me very angry. Everyone acts like its *just* vitamins. But, this impacts his immune system. The myelin on his neurotransmitters, his ability to store calcium in his bones, his liver function, his heart and kidneys, and everything in between.

TestifyToLove
05-03-2009, 12:24 PM
I've actually been very worried about this in M. His fat soluable vitamin levels have been dangerously low since 1/08 now. For the last 3 months, he has begun to complain about leg pain that centers in his thigh. And, a regular x-ray in Dec detected an anormality of that hip bone that has not yet been pursued.

We just recently adjusted his vitamins again and the CF clinic is going to re-test his levels to see if its working after 3 months. But, I think its time to start watching his bone density.

I'm amazed at how little attention and priority has been given to this issue. The GI (experienced with CF patients but not part of our CFF because we don't urrently have any GIs on staff there) doesn't do anything because its complicated. The CF doctors refer me to the nutritionalist. The nutritionalist is NOT a doctor and is clueless except to tell me to give him more vitamins. Neuro tells us his vitamin levels are low enough to cause siezures but since his psych has him on Depakote, they don't want to touch it.

The only person even trying to pay attention to this issue is the Heptalogist. He does it because he wants the best for M. But, he continually tells me this is a GI concern not Heptology.

I can only see the abstract to this study. Are you telling me that bone density is now associated with decreased longevity? Because I'm convinced at this point M has GOT to have decreased one density issues and I find that very concerning that it may be inpacting not just quality of life as I knew but now quantity as well.

That actually makes me very angry. Everyone acts like its *just* vitamins. But, this impacts his immune system. The myelin on his neurotransmitters, his ability to store calcium in his bones, his liver function, his heart and kidneys, and everything in between.

TestifyToLove
05-03-2009, 12:24 PM
I've actually been very worried about this in M. His fat soluable vitamin levels have been dangerously low since 1/08 now. For the last 3 months, he has begun to complain about leg pain that centers in his thigh. And, a regular x-ray in Dec detected an anormality of that hip bone that has not yet been pursued.

We just recently adjusted his vitamins again and the CF clinic is going to re-test his levels to see if its working after 3 months. But, I think its time to start watching his bone density.

I'm amazed at how little attention and priority has been given to this issue. The GI (experienced with CF patients but not part of our CFF because we don't urrently have any GIs on staff there) doesn't do anything because its complicated. The CF doctors refer me to the nutritionalist. The nutritionalist is NOT a doctor and is clueless except to tell me to give him more vitamins. Neuro tells us his vitamin levels are low enough to cause siezures but since his psych has him on Depakote, they don't want to touch it.

The only person even trying to pay attention to this issue is the Heptalogist. He does it because he wants the best for M. But, he continually tells me this is a GI concern not Heptology.

I can only see the abstract to this study. Are you telling me that bone density is now associated with decreased longevity? Because I'm convinced at this point M has GOT to have decreased one density issues and I find that very concerning that it may be inpacting not just quality of life as I knew but now quantity as well.

That actually makes me very angry. Everyone acts like its *just* vitamins. But, this impacts his immune system. The myelin on his neurotransmitters, his ability to store calcium in his bones, his liver function, his heart and kidneys, and everything in between.

TestifyToLove
05-03-2009, 12:24 PM
I've actually been very worried about this in M. His fat soluable vitamin levels have been dangerously low since 1/08 now. For the last 3 months, he has begun to complain about leg pain that centers in his thigh. And, a regular x-ray in Dec detected an anormality of that hip bone that has not yet been pursued.
<br />
<br />We just recently adjusted his vitamins again and the CF clinic is going to re-test his levels to see if its working after 3 months. But, I think its time to start watching his bone density.
<br />
<br />I'm amazed at how little attention and priority has been given to this issue. The GI (experienced with CF patients but not part of our CFF because we don't urrently have any GIs on staff there) doesn't do anything because its complicated. The CF doctors refer me to the nutritionalist. The nutritionalist is NOT a doctor and is clueless except to tell me to give him more vitamins. Neuro tells us his vitamin levels are low enough to cause siezures but since his psych has him on Depakote, they don't want to touch it.
<br />
<br />The only person even trying to pay attention to this issue is the Heptalogist. He does it because he wants the best for M. But, he continually tells me this is a GI concern not Heptology.
<br />
<br />I can only see the abstract to this study. Are you telling me that bone density is now associated with decreased longevity? Because I'm convinced at this point M has GOT to have decreased one density issues and I find that very concerning that it may be inpacting not just quality of life as I knew but now quantity as well.
<br />
<br />That actually makes me very angry. Everyone acts like its *just* vitamins. But, this impacts his immune system. The myelin on his neurotransmitters, his ability to store calcium in his bones, his liver function, his heart and kidneys, and everything in between.

JazzysMom
05-03-2009, 12:29 PM
Sadly I dont think bone density is really addressed until a CFer is older.

Just like with "healthy" people.....it seems the issue gets addressed AFTER they are in the high risk bracket instead of before they are at that point.

JazzysMom
05-03-2009, 12:29 PM
Sadly I dont think bone density is really addressed until a CFer is older.

Just like with "healthy" people.....it seems the issue gets addressed AFTER they are in the high risk bracket instead of before they are at that point.

JazzysMom
05-03-2009, 12:29 PM
Sadly I dont think bone density is really addressed until a CFer is older.

Just like with "healthy" people.....it seems the issue gets addressed AFTER they are in the high risk bracket instead of before they are at that point.

JazzysMom
05-03-2009, 12:29 PM
Sadly I dont think bone density is really addressed until a CFer is older.

Just like with "healthy" people.....it seems the issue gets addressed AFTER they are in the high risk bracket instead of before they are at that point.

JazzysMom
05-03-2009, 12:29 PM
Sadly I dont think bone density is really addressed until a CFer is older.
<br />
<br />Just like with "healthy" people.....it seems the issue gets addressed AFTER they are in the high risk bracket instead of before they are at that point.

MicheleGazelle
05-03-2009, 01:42 PM
Bone demineralization is induced by excess acidity:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nature.com/ki/journal/v30/n5/abs/ki1986242a.html">http://www.nature.com/ki/journ...n5/abs/ki1986242a.html</a>
<div class="FTQUOTE"><begin quote>Metabolic acidosis (MA) has been implicated in the pathogenesis of both osteomalacia and osteopenia.</end quote></div>
The body strips calcium from the bones in a desperate attempt to neutralize the blood acidity. Human life is not sustainable outside of a very narrow blood ph range. The body will destroy itself to maintain that in order to survive a bit longer.

Getting excess acidity under control has been a cornerstone of my efforts to get well. I think bone demineralization is only a symptom of the real issue. Excess acidity also promotes infection. And undoubtedly does a whole lot of other bad things.

MicheleGazelle
05-03-2009, 01:42 PM
Bone demineralization is induced by excess acidity:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nature.com/ki/journal/v30/n5/abs/ki1986242a.html">http://www.nature.com/ki/journ...n5/abs/ki1986242a.html</a>
<div class="FTQUOTE"><begin quote>Metabolic acidosis (MA) has been implicated in the pathogenesis of both osteomalacia and osteopenia.</end quote></div>
The body strips calcium from the bones in a desperate attempt to neutralize the blood acidity. Human life is not sustainable outside of a very narrow blood ph range. The body will destroy itself to maintain that in order to survive a bit longer.

Getting excess acidity under control has been a cornerstone of my efforts to get well. I think bone demineralization is only a symptom of the real issue. Excess acidity also promotes infection. And undoubtedly does a whole lot of other bad things.

MicheleGazelle
05-03-2009, 01:42 PM
Bone demineralization is induced by excess acidity:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nature.com/ki/journal/v30/n5/abs/ki1986242a.html">http://www.nature.com/ki/journ...n5/abs/ki1986242a.html</a>
<div class="FTQUOTE"><begin quote>Metabolic acidosis (MA) has been implicated in the pathogenesis of both osteomalacia and osteopenia.</end quote></div>
The body strips calcium from the bones in a desperate attempt to neutralize the blood acidity. Human life is not sustainable outside of a very narrow blood ph range. The body will destroy itself to maintain that in order to survive a bit longer.

Getting excess acidity under control has been a cornerstone of my efforts to get well. I think bone demineralization is only a symptom of the real issue. Excess acidity also promotes infection. And undoubtedly does a whole lot of other bad things.

MicheleGazelle
05-03-2009, 01:42 PM
Bone demineralization is induced by excess acidity:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nature.com/ki/journal/v30/n5/abs/ki1986242a.html">http://www.nature.com/ki/journ...n5/abs/ki1986242a.html</a>
<div class="FTQUOTE"><begin quote>Metabolic acidosis (MA) has been implicated in the pathogenesis of both osteomalacia and osteopenia.</end quote>
The body strips calcium from the bones in a desperate attempt to neutralize the blood acidity. Human life is not sustainable outside of a very narrow blood ph range. The body will destroy itself to maintain that in order to survive a bit longer.

Getting excess acidity under control has been a cornerstone of my efforts to get well. I think bone demineralization is only a symptom of the real issue. Excess acidity also promotes infection. And undoubtedly does a whole lot of other bad things.

MicheleGazelle
05-03-2009, 01:42 PM
Bone demineralization is induced by excess acidity:
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.nature.com/ki/journal/v30/n5/abs/ki1986242a.html">http://www.nature.com/ki/journ...n5/abs/ki1986242a.html</a>
<br /><div class="FTQUOTE"><begin quote>Metabolic acidosis (MA) has been implicated in the pathogenesis of both osteomalacia and osteopenia.</end quote>
<br />The body strips calcium from the bones in a desperate attempt to neutralize the blood acidity. Human life is not sustainable outside of a very narrow blood ph range. The body will destroy itself to maintain that in order to survive a bit longer.
<br />
<br />Getting excess acidity under control has been a cornerstone of my efforts to get well. I think bone demineralization is only a symptom of the real issue. Excess acidity also promotes infection. And undoubtedly does a whole lot of other bad things.

kitomd21
05-03-2009, 01:45 PM
Amy - you are always so resourceful - what are your thoughts regarding AquaADEKS? I've previously posted the question as to why all CF patients aren't prescribed this form of vitamins/antioxidants as it was specifically formulated for easier absorption of fat-soluble vitamins (i.e., for those with malabsorption issues). My dd has been taking AdquADEKS since diagnosis per her CF doctors....

kitomd21
05-03-2009, 01:45 PM
Amy - you are always so resourceful - what are your thoughts regarding AquaADEKS? I've previously posted the question as to why all CF patients aren't prescribed this form of vitamins/antioxidants as it was specifically formulated for easier absorption of fat-soluble vitamins (i.e., for those with malabsorption issues). My dd has been taking AdquADEKS since diagnosis per her CF doctors....

kitomd21
05-03-2009, 01:45 PM
Amy - you are always so resourceful - what are your thoughts regarding AquaADEKS? I've previously posted the question as to why all CF patients aren't prescribed this form of vitamins/antioxidants as it was specifically formulated for easier absorption of fat-soluble vitamins (i.e., for those with malabsorption issues). My dd has been taking AdquADEKS since diagnosis per her CF doctors....

kitomd21
05-03-2009, 01:45 PM
Amy - you are always so resourceful - what are your thoughts regarding AquaADEKS? I've previously posted the question as to why all CF patients aren't prescribed this form of vitamins/antioxidants as it was specifically formulated for easier absorption of fat-soluble vitamins (i.e., for those with malabsorption issues). My dd has been taking AdquADEKS since diagnosis per her CF doctors....

kitomd21
05-03-2009, 01:45 PM
Amy - you are always so resourceful - what are your thoughts regarding AquaADEKS? I've previously posted the question as to why all CF patients aren't prescribed this form of vitamins/antioxidants as it was specifically formulated for easier absorption of fat-soluble vitamins (i.e., for those with malabsorption issues). My dd has been taking AdquADEKS since diagnosis per her CF doctors....

TestifyToLove
05-03-2009, 01:51 PM
Katie, M was on aquaADEKS from birth. Last January, his vitamin levels bombed with no explanations nor changes. It has been since that point that they continue to test his vitamin levels but do nothing as they remain dangerously low.

TestifyToLove
05-03-2009, 01:51 PM
Katie, M was on aquaADEKS from birth. Last January, his vitamin levels bombed with no explanations nor changes. It has been since that point that they continue to test his vitamin levels but do nothing as they remain dangerously low.

TestifyToLove
05-03-2009, 01:51 PM
Katie, M was on aquaADEKS from birth. Last January, his vitamin levels bombed with no explanations nor changes. It has been since that point that they continue to test his vitamin levels but do nothing as they remain dangerously low.

TestifyToLove
05-03-2009, 01:51 PM
Katie, M was on aquaADEKS from birth. Last January, his vitamin levels bombed with no explanations nor changes. It has been since that point that they continue to test his vitamin levels but do nothing as they remain dangerously low.

TestifyToLove
05-03-2009, 01:51 PM
Katie, M was on aquaADEKS from birth. Last January, his vitamin levels bombed with no explanations nor changes. It has been since that point that they continue to test his vitamin levels but do nothing as they remain dangerously low.

hmw
05-03-2009, 04:36 PM
M is so complicated. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Having psych/neuro as well as other health concerns- as well as all of the problems caused by his CF- must be so difficult to cope with and all of these problems impact each other.

Have any of his drs. brought up the possibility of Depakote contributing to anything going on with him? It can deplete calcium, and bone pain is one of it's documented side effects. There is also some evidence is can lower levels of vitamin A, D and E. Contributing to osteoporosis as well as depleting vitamin levels is something that is more likely to happen over time with meds like Depakote but I am sure with kids like M who are already predisposed to these problems, these side effects can be more severe and impact someone much sooner.

I hope some kind of explanation can be found... I'm so sorry that such a concerning problem has been ignored for so long.

eta: thank you for bringing this to our attention, Amy.
Emily's vit D & calcium levels are on the low side and she's at risk for this both due to her CF and because of long-term use of anticonvulsant medications and it's so important to be well-informed when it comes to this stuff.

hmw
05-03-2009, 04:36 PM
M is so complicated. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Having psych/neuro as well as other health concerns- as well as all of the problems caused by his CF- must be so difficult to cope with and all of these problems impact each other.

Have any of his drs. brought up the possibility of Depakote contributing to anything going on with him? It can deplete calcium, and bone pain is one of it's documented side effects. There is also some evidence is can lower levels of vitamin A, D and E. Contributing to osteoporosis as well as depleting vitamin levels is something that is more likely to happen over time with meds like Depakote but I am sure with kids like M who are already predisposed to these problems, these side effects can be more severe and impact someone much sooner.

I hope some kind of explanation can be found... I'm so sorry that such a concerning problem has been ignored for so long.

eta: thank you for bringing this to our attention, Amy.
Emily's vit D & calcium levels are on the low side and she's at risk for this both due to her CF and because of long-term use of anticonvulsant medications and it's so important to be well-informed when it comes to this stuff.

hmw
05-03-2009, 04:36 PM
M is so complicated. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Having psych/neuro as well as other health concerns- as well as all of the problems caused by his CF- must be so difficult to cope with and all of these problems impact each other.

Have any of his drs. brought up the possibility of Depakote contributing to anything going on with him? It can deplete calcium, and bone pain is one of it's documented side effects. There is also some evidence is can lower levels of vitamin A, D and E. Contributing to osteoporosis as well as depleting vitamin levels is something that is more likely to happen over time with meds like Depakote but I am sure with kids like M who are already predisposed to these problems, these side effects can be more severe and impact someone much sooner.

I hope some kind of explanation can be found... I'm so sorry that such a concerning problem has been ignored for so long.

eta: thank you for bringing this to our attention, Amy.
Emily's vit D & calcium levels are on the low side and she's at risk for this both due to her CF and because of long-term use of anticonvulsant medications and it's so important to be well-informed when it comes to this stuff.

hmw
05-03-2009, 04:36 PM
M is so complicated. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Having psych/neuro as well as other health concerns- as well as all of the problems caused by his CF- must be so difficult to cope with and all of these problems impact each other.

Have any of his drs. brought up the possibility of Depakote contributing to anything going on with him? It can deplete calcium, and bone pain is one of it's documented side effects. There is also some evidence is can lower levels of vitamin A, D and E. Contributing to osteoporosis as well as depleting vitamin levels is something that is more likely to happen over time with meds like Depakote but I am sure with kids like M who are already predisposed to these problems, these side effects can be more severe and impact someone much sooner.

I hope some kind of explanation can be found... I'm so sorry that such a concerning problem has been ignored for so long.

eta: thank you for bringing this to our attention, Amy.
Emily's vit D & calcium levels are on the low side and she's at risk for this both due to her CF and because of long-term use of anticonvulsant medications and it's so important to be well-informed when it comes to this stuff.

hmw
05-03-2009, 04:36 PM
M is so complicated. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Having psych/neuro as well as other health concerns- as well as all of the problems caused by his CF- must be so difficult to cope with and all of these problems impact each other.
<br />
<br />Have any of his drs. brought up the possibility of Depakote contributing to anything going on with him? It can deplete calcium, and bone pain is one of it's documented side effects. There is also some evidence is can lower levels of vitamin A, D and E. Contributing to osteoporosis as well as depleting vitamin levels is something that is more likely to happen over time with meds like Depakote but I am sure with kids like M who are already predisposed to these problems, these side effects can be more severe and impact someone much sooner.
<br />
<br />I hope some kind of explanation can be found... I'm so sorry that such a concerning problem has been ignored for so long.
<br />
<br />eta: thank you for bringing this to our attention, Amy.
<br />Emily's vit D & calcium levels are on the low side and she's at risk for this both due to her CF and because of long-term use of anticonvulsant medications and it's so important to be well-informed when it comes to this stuff.

Buckeye
05-03-2009, 06:00 PM
We found out my son had Osteoporosis because he had kidney stones and has had two unexplained broken legs. If your body isn't sending the Calcium to the bones it tends to dump it in the kidneys thus causing kidney stones. As for the broken bones, he is in a wheelchair most of the time and disuse can cause Osteoporosis also.He had a DEXA scan and his score was a -5, which means he is five times more likely to break a bone than another child his age.We are doing Zoledronic Acid which is an IV Therapy for it. He does it every three months for an undetermined length of time - they estimate 2-3 years until his bone density improves enough. For kids with that low of a bone density score they felt the IV Therapy would be a quicker fix than the oral meds that you can take for Osteoporosis.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.I thought maybe I was nuts and then when I saw the Nephrologist he confirmed that CF patients tend to have problems with bone density. All of my son's other doctors talk back and forth pretty regularly, but for some reason the CF Clinic is an island unto itself and they never venture out of their cubicles. I'm going to send them this article and see what their response will be.Thanks for posting it Amy!!!

Buckeye
05-03-2009, 06:00 PM
We found out my son had Osteoporosis because he had kidney stones and has had two unexplained broken legs. If your body isn't sending the Calcium to the bones it tends to dump it in the kidneys thus causing kidney stones. As for the broken bones, he is in a wheelchair most of the time and disuse can cause Osteoporosis also.He had a DEXA scan and his score was a -5, which means he is five times more likely to break a bone than another child his age.We are doing Zoledronic Acid which is an IV Therapy for it. He does it every three months for an undetermined length of time - they estimate 2-3 years until his bone density improves enough. For kids with that low of a bone density score they felt the IV Therapy would be a quicker fix than the oral meds that you can take for Osteoporosis.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.I thought maybe I was nuts and then when I saw the Nephrologist he confirmed that CF patients tend to have problems with bone density. All of my son's other doctors talk back and forth pretty regularly, but for some reason the CF Clinic is an island unto itself and they never venture out of their cubicles. I'm going to send them this article and see what their response will be.Thanks for posting it Amy!!!

Buckeye
05-03-2009, 06:00 PM
We found out my son had Osteoporosis because he had kidney stones and has had two unexplained broken legs. If your body isn't sending the Calcium to the bones it tends to dump it in the kidneys thus causing kidney stones. As for the broken bones, he is in a wheelchair most of the time and disuse can cause Osteoporosis also.He had a DEXA scan and his score was a -5, which means he is five times more likely to break a bone than another child his age.We are doing Zoledronic Acid which is an IV Therapy for it. He does it every three months for an undetermined length of time - they estimate 2-3 years until his bone density improves enough. For kids with that low of a bone density score they felt the IV Therapy would be a quicker fix than the oral meds that you can take for Osteoporosis.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.I thought maybe I was nuts and then when I saw the Nephrologist he confirmed that CF patients tend to have problems with bone density. All of my son's other doctors talk back and forth pretty regularly, but for some reason the CF Clinic is an island unto itself and they never venture out of their cubicles. I'm going to send them this article and see what their response will be.Thanks for posting it Amy!!!

Buckeye
05-03-2009, 06:00 PM
We found out my son had Osteoporosis because he had kidney stones and has had two unexplained broken legs. If your body isn't sending the Calcium to the bones it tends to dump it in the kidneys thus causing kidney stones. As for the broken bones, he is in a wheelchair most of the time and disuse can cause Osteoporosis also.He had a DEXA scan and his score was a -5, which means he is five times more likely to break a bone than another child his age.We are doing Zoledronic Acid which is an IV Therapy for it. He does it every three months for an undetermined length of time - they estimate 2-3 years until his bone density improves enough. For kids with that low of a bone density score they felt the IV Therapy would be a quicker fix than the oral meds that you can take for Osteoporosis.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.I thought maybe I was nuts and then when I saw the Nephrologist he confirmed that CF patients tend to have problems with bone density. All of my son's other doctors talk back and forth pretty regularly, but for some reason the CF Clinic is an island unto itself and they never venture out of their cubicles. I'm going to send them this article and see what their response will be.Thanks for posting it Amy!!!

Buckeye
05-03-2009, 06:00 PM
We found out my son had Osteoporosis because he had kidney stones and has had two unexplained broken legs. If your body isn't sending the Calcium to the bones it tends to dump it in the kidneys thus causing kidney stones. As for the broken bones, he is in a wheelchair most of the time and disuse can cause Osteoporosis also.<p>He had a DEXA scan and his score was a -5, which means he is five times more likely to break a bone than another child his age.<p>We are doing Zoledronic Acid which is an IV Therapy for it. He does it every three months for an undetermined length of time - they estimate 2-3 years until his bone density improves enough. For kids with that low of a bone density score they felt the IV Therapy would be a quicker fix than the oral meds that you can take for Osteoporosis.<p>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.<p>I thought maybe I was nuts and then when I saw the Nephrologist he confirmed that CF patients tend to have problems with bone density. All of my son's other doctors talk back and forth pretty regularly, but for some reason the CF Clinic is an island unto itself and they never venture out of their cubicles. I'm going to send them this article and see what their response will be.<p>Thanks for posting it Amy!!!

TestifyToLove
05-03-2009, 06:11 PM
Yeah, he started the Depakote 9 months after his vitamin levels took a nosedive, so while it might accelerate the issue, it wasn't the cause.

Right now, we're trying Source CF vitamins with 2 enzymes daily for 3 months. If his vitamin levels aren't better, I'm going to get aggressive with them this time. I'm convinced the nightly complaints of thigh pain are related to this vitamin issue.

I'm going to ask for this scan when we go back in next time. If I can't get the CF center to order it, I'll get his primary to run it. Fortunately, M has an excellent primary Doc who does more to manage M's care than the dozen specialists combined sometimes. The specialists often want to only look at their area. The primary typically does a full summary review of M's case every 1-2 months just to make sure *someone* is keeping an eye on everything for this poor kid.

The more I learn about bone denisty issues, the more concerned I am for M, especially given the issues he's had for 16 months and counting now. I'm so tired of being told to just talk to the nutritionalist, obviously we need to do something more than just throwing more vitamins in him. He is not getting the vitamins from his gut to his bloodstream.

TestifyToLove
05-03-2009, 06:11 PM
Yeah, he started the Depakote 9 months after his vitamin levels took a nosedive, so while it might accelerate the issue, it wasn't the cause.

Right now, we're trying Source CF vitamins with 2 enzymes daily for 3 months. If his vitamin levels aren't better, I'm going to get aggressive with them this time. I'm convinced the nightly complaints of thigh pain are related to this vitamin issue.

I'm going to ask for this scan when we go back in next time. If I can't get the CF center to order it, I'll get his primary to run it. Fortunately, M has an excellent primary Doc who does more to manage M's care than the dozen specialists combined sometimes. The specialists often want to only look at their area. The primary typically does a full summary review of M's case every 1-2 months just to make sure *someone* is keeping an eye on everything for this poor kid.

The more I learn about bone denisty issues, the more concerned I am for M, especially given the issues he's had for 16 months and counting now. I'm so tired of being told to just talk to the nutritionalist, obviously we need to do something more than just throwing more vitamins in him. He is not getting the vitamins from his gut to his bloodstream.

TestifyToLove
05-03-2009, 06:11 PM
Yeah, he started the Depakote 9 months after his vitamin levels took a nosedive, so while it might accelerate the issue, it wasn't the cause.

Right now, we're trying Source CF vitamins with 2 enzymes daily for 3 months. If his vitamin levels aren't better, I'm going to get aggressive with them this time. I'm convinced the nightly complaints of thigh pain are related to this vitamin issue.

I'm going to ask for this scan when we go back in next time. If I can't get the CF center to order it, I'll get his primary to run it. Fortunately, M has an excellent primary Doc who does more to manage M's care than the dozen specialists combined sometimes. The specialists often want to only look at their area. The primary typically does a full summary review of M's case every 1-2 months just to make sure *someone* is keeping an eye on everything for this poor kid.

The more I learn about bone denisty issues, the more concerned I am for M, especially given the issues he's had for 16 months and counting now. I'm so tired of being told to just talk to the nutritionalist, obviously we need to do something more than just throwing more vitamins in him. He is not getting the vitamins from his gut to his bloodstream.

TestifyToLove
05-03-2009, 06:11 PM
Yeah, he started the Depakote 9 months after his vitamin levels took a nosedive, so while it might accelerate the issue, it wasn't the cause.

Right now, we're trying Source CF vitamins with 2 enzymes daily for 3 months. If his vitamin levels aren't better, I'm going to get aggressive with them this time. I'm convinced the nightly complaints of thigh pain are related to this vitamin issue.

I'm going to ask for this scan when we go back in next time. If I can't get the CF center to order it, I'll get his primary to run it. Fortunately, M has an excellent primary Doc who does more to manage M's care than the dozen specialists combined sometimes. The specialists often want to only look at their area. The primary typically does a full summary review of M's case every 1-2 months just to make sure *someone* is keeping an eye on everything for this poor kid.

The more I learn about bone denisty issues, the more concerned I am for M, especially given the issues he's had for 16 months and counting now. I'm so tired of being told to just talk to the nutritionalist, obviously we need to do something more than just throwing more vitamins in him. He is not getting the vitamins from his gut to his bloodstream.

TestifyToLove
05-03-2009, 06:11 PM
Yeah, he started the Depakote 9 months after his vitamin levels took a nosedive, so while it might accelerate the issue, it wasn't the cause.
<br />
<br />Right now, we're trying Source CF vitamins with 2 enzymes daily for 3 months. If his vitamin levels aren't better, I'm going to get aggressive with them this time. I'm convinced the nightly complaints of thigh pain are related to this vitamin issue.
<br />
<br />I'm going to ask for this scan when we go back in next time. If I can't get the CF center to order it, I'll get his primary to run it. Fortunately, M has an excellent primary Doc who does more to manage M's care than the dozen specialists combined sometimes. The specialists often want to only look at their area. The primary typically does a full summary review of M's case every 1-2 months just to make sure *someone* is keeping an eye on everything for this poor kid.
<br />
<br />The more I learn about bone denisty issues, the more concerned I am for M, especially given the issues he's had for 16 months and counting now. I'm so tired of being told to just talk to the nutritionalist, obviously we need to do something more than just throwing more vitamins in him. He is not getting the vitamins from his gut to his bloodstream.

saveferris2009
05-04-2009, 12:24 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TestifyToLove</b></i>



I can only see the abstract to this study. </end quote></div>

Ya, I only have access to abstracts as well. You have to pay to see the contents of the journal, but you may have access to the journal through a local library or through your physician.



<div class="FTQUOTE"><begin quote> Are you telling me that bone density is now associated with decreased longevity? </end quote></div>

Well so it's the whole causation vs. correlation thing.

My opinion is that these things usually go together - poor nutrition, poor lung function, etc etc etc.


<div class="FTQUOTE"><begin quote>That actually makes me very angry. Everyone acts like its *just* vitamins. But, this impacts his immune system. The myelin on his neurotransmitters, his ability to store calcium in his bones, his liver function, his heart and kidneys, and everything in between.</end quote></div>

You are right. You are absolutely correct. Get aggressive - go to another doc, 2nd opinion, whatever it takes. It's a very important part of a CFer's life - you are right!

saveferris2009
05-04-2009, 12:24 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TestifyToLove</b></i>



I can only see the abstract to this study. </end quote></div>

Ya, I only have access to abstracts as well. You have to pay to see the contents of the journal, but you may have access to the journal through a local library or through your physician.



<div class="FTQUOTE"><begin quote> Are you telling me that bone density is now associated with decreased longevity? </end quote></div>

Well so it's the whole causation vs. correlation thing.

My opinion is that these things usually go together - poor nutrition, poor lung function, etc etc etc.


<div class="FTQUOTE"><begin quote>That actually makes me very angry. Everyone acts like its *just* vitamins. But, this impacts his immune system. The myelin on his neurotransmitters, his ability to store calcium in his bones, his liver function, his heart and kidneys, and everything in between.</end quote></div>

You are right. You are absolutely correct. Get aggressive - go to another doc, 2nd opinion, whatever it takes. It's a very important part of a CFer's life - you are right!

saveferris2009
05-04-2009, 12:24 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TestifyToLove</b></i>



I can only see the abstract to this study. </end quote></div>

Ya, I only have access to abstracts as well. You have to pay to see the contents of the journal, but you may have access to the journal through a local library or through your physician.



<div class="FTQUOTE"><begin quote> Are you telling me that bone density is now associated with decreased longevity? </end quote></div>

Well so it's the whole causation vs. correlation thing.

My opinion is that these things usually go together - poor nutrition, poor lung function, etc etc etc.


<div class="FTQUOTE"><begin quote>That actually makes me very angry. Everyone acts like its *just* vitamins. But, this impacts his immune system. The myelin on his neurotransmitters, his ability to store calcium in his bones, his liver function, his heart and kidneys, and everything in between.</end quote></div>

You are right. You are absolutely correct. Get aggressive - go to another doc, 2nd opinion, whatever it takes. It's a very important part of a CFer's life - you are right!

saveferris2009
05-04-2009, 12:24 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TestifyToLove</b></i>



I can only see the abstract to this study. </end quote>

Ya, I only have access to abstracts as well. You have to pay to see the contents of the journal, but you may have access to the journal through a local library or through your physician.



<div class="FTQUOTE"><begin quote> Are you telling me that bone density is now associated with decreased longevity? </end quote>

Well so it's the whole causation vs. correlation thing.

My opinion is that these things usually go together - poor nutrition, poor lung function, etc etc etc.


<div class="FTQUOTE"><begin quote>That actually makes me very angry. Everyone acts like its *just* vitamins. But, this impacts his immune system. The myelin on his neurotransmitters, his ability to store calcium in his bones, his liver function, his heart and kidneys, and everything in between.</end quote>

You are right. You are absolutely correct. Get aggressive - go to another doc, 2nd opinion, whatever it takes. It's a very important part of a CFer's life - you are right!

saveferris2009
05-04-2009, 12:24 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TestifyToLove</b></i>
<br />
<br />
<br />
<br />I can only see the abstract to this study. </end quote>
<br />
<br />Ya, I only have access to abstracts as well. You have to pay to see the contents of the journal, but you may have access to the journal through a local library or through your physician.
<br />
<br />
<br />
<br /><div class="FTQUOTE"><begin quote> Are you telling me that bone density is now associated with decreased longevity? </end quote>
<br />
<br />Well so it's the whole causation vs. correlation thing.
<br />
<br />My opinion is that these things usually go together - poor nutrition, poor lung function, etc etc etc.
<br />
<br />
<br /><div class="FTQUOTE"><begin quote>That actually makes me very angry. Everyone acts like its *just* vitamins. But, this impacts his immune system. The myelin on his neurotransmitters, his ability to store calcium in his bones, his liver function, his heart and kidneys, and everything in between.</end quote>
<br />
<br />You are right. You are absolutely correct. Get aggressive - go to another doc, 2nd opinion, whatever it takes. It's a very important part of a CFer's life - you are right!
<br />

saveferris2009
05-04-2009, 12:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

Amy - you are always so resourceful - what are your thoughts regarding AquaADEKS? I've previously posted the question as to why all CF patients aren't prescribed this form of vitamins/antioxidants as it was specifically formulated for easier absorption of fat-soluble vitamins (i.e., for those with malabsorption issues). My dd has been taking AdquADEKS since diagnosis per her CF doctors....</end quote></div>


Ya AquaADEKS are fantastic, in my opinion.

Like you've heard me say regarding NAC, supplements aren't regulated in the US. So prescription supplements, such as ADEKS, are wonderful because they are regulated - so you know they're fantastic quality.

I don't take ADEKS myself because I get enough vitamins from the food I eat (I get levels tested every few months) - who knows why... I'm PI, so you'd think I'd have issues. But I guess the enzymes help me with enough.

But anyway, I think CFer's should be tested for vitamin levels yearly at the bare minimum and should get DEXA scans yearly. (these are also CFF guidelines)

saveferris2009
05-04-2009, 12:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

Amy - you are always so resourceful - what are your thoughts regarding AquaADEKS? I've previously posted the question as to why all CF patients aren't prescribed this form of vitamins/antioxidants as it was specifically formulated for easier absorption of fat-soluble vitamins (i.e., for those with malabsorption issues). My dd has been taking AdquADEKS since diagnosis per her CF doctors....</end quote></div>


Ya AquaADEKS are fantastic, in my opinion.

Like you've heard me say regarding NAC, supplements aren't regulated in the US. So prescription supplements, such as ADEKS, are wonderful because they are regulated - so you know they're fantastic quality.

I don't take ADEKS myself because I get enough vitamins from the food I eat (I get levels tested every few months) - who knows why... I'm PI, so you'd think I'd have issues. But I guess the enzymes help me with enough.

But anyway, I think CFer's should be tested for vitamin levels yearly at the bare minimum and should get DEXA scans yearly. (these are also CFF guidelines)

saveferris2009
05-04-2009, 12:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

Amy - you are always so resourceful - what are your thoughts regarding AquaADEKS? I've previously posted the question as to why all CF patients aren't prescribed this form of vitamins/antioxidants as it was specifically formulated for easier absorption of fat-soluble vitamins (i.e., for those with malabsorption issues). My dd has been taking AdquADEKS since diagnosis per her CF doctors....</end quote></div>


Ya AquaADEKS are fantastic, in my opinion.

Like you've heard me say regarding NAC, supplements aren't regulated in the US. So prescription supplements, such as ADEKS, are wonderful because they are regulated - so you know they're fantastic quality.

I don't take ADEKS myself because I get enough vitamins from the food I eat (I get levels tested every few months) - who knows why... I'm PI, so you'd think I'd have issues. But I guess the enzymes help me with enough.

But anyway, I think CFer's should be tested for vitamin levels yearly at the bare minimum and should get DEXA scans yearly. (these are also CFF guidelines)

saveferris2009
05-04-2009, 12:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

Amy - you are always so resourceful - what are your thoughts regarding AquaADEKS? I've previously posted the question as to why all CF patients aren't prescribed this form of vitamins/antioxidants as it was specifically formulated for easier absorption of fat-soluble vitamins (i.e., for those with malabsorption issues). My dd has been taking AdquADEKS since diagnosis per her CF doctors....</end quote>


Ya AquaADEKS are fantastic, in my opinion.

Like you've heard me say regarding NAC, supplements aren't regulated in the US. So prescription supplements, such as ADEKS, are wonderful because they are regulated - so you know they're fantastic quality.

I don't take ADEKS myself because I get enough vitamins from the food I eat (I get levels tested every few months) - who knows why... I'm PI, so you'd think I'd have issues. But I guess the enzymes help me with enough.

But anyway, I think CFer's should be tested for vitamin levels yearly at the bare minimum and should get DEXA scans yearly. (these are also CFF guidelines)

saveferris2009
05-04-2009, 12:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>
<br />
<br />Amy - you are always so resourceful - what are your thoughts regarding AquaADEKS? I've previously posted the question as to why all CF patients aren't prescribed this form of vitamins/antioxidants as it was specifically formulated for easier absorption of fat-soluble vitamins (i.e., for those with malabsorption issues). My dd has been taking AdquADEKS since diagnosis per her CF doctors....</end quote>
<br />
<br />
<br />Ya AquaADEKS are fantastic, in my opinion.
<br />
<br />Like you've heard me say regarding NAC, supplements aren't regulated in the US. So prescription supplements, such as ADEKS, are wonderful because they are regulated - so you know they're fantastic quality.
<br />
<br />I don't take ADEKS myself because I get enough vitamins from the food I eat (I get levels tested every few months) - who knows why... I'm PI, so you'd think I'd have issues. But I guess the enzymes help me with enough.
<br />
<br />But anyway, I think CFer's should be tested for vitamin levels yearly at the bare minimum and should get DEXA scans yearly. (these are also CFF guidelines)

saveferris2009
05-04-2009, 12:29 AM
<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.

saveferris2009
05-04-2009, 12:29 AM
<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.

saveferris2009
05-04-2009, 12:29 AM
<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.

saveferris2009
05-04-2009, 12:29 AM
<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.

saveferris2009
05-04-2009, 12:29 AM
<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.

saveferris2009
05-04-2009, 12:31 AM
<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

saveferris2009
05-04-2009, 12:31 AM
<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

saveferris2009
05-04-2009, 12:31 AM
<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

saveferris2009
05-04-2009, 12:31 AM
<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

saveferris2009
05-04-2009, 12:31 AM
<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 />

kayleesgrandma
05-05-2009, 02:15 AM
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...

kayleesgrandma
05-05-2009, 02:15 AM
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...

kayleesgrandma
05-05-2009, 02:15 AM
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...

kayleesgrandma
05-05-2009, 02:15 AM
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...

kayleesgrandma
05-05-2009, 02:15 AM
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...

JORDYSMOM
05-05-2009, 01:10 PM
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

JORDYSMOM
05-05-2009, 01:10 PM
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

JORDYSMOM
05-05-2009, 01:10 PM
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

JORDYSMOM
05-05-2009, 01:10 PM
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

JORDYSMOM
05-05-2009, 01:10 PM
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

saveferris2009
05-05-2009, 01:37 PM
osteoporosis is widely accepted within the CF community, however as said earlier, it's considered a far far 2nd or 3rd to lung issues.

the problems are simple: CFer's don't absorb fat soluble vitamins very well, which includes vitamin D. Vit D is essential for calcium absorption.

there are other issues as well, but this is a strong culprit.

saveferris2009
05-05-2009, 01:37 PM
osteoporosis is widely accepted within the CF community, however as said earlier, it's considered a far far 2nd or 3rd to lung issues.

the problems are simple: CFer's don't absorb fat soluble vitamins very well, which includes vitamin D. Vit D is essential for calcium absorption.

there are other issues as well, but this is a strong culprit.

saveferris2009
05-05-2009, 01:37 PM
osteoporosis is widely accepted within the CF community, however as said earlier, it's considered a far far 2nd or 3rd to lung issues.

the problems are simple: CFer's don't absorb fat soluble vitamins very well, which includes vitamin D. Vit D is essential for calcium absorption.

there are other issues as well, but this is a strong culprit.

saveferris2009
05-05-2009, 01:37 PM
osteoporosis is widely accepted within the CF community, however as said earlier, it's considered a far far 2nd or 3rd to lung issues.

the problems are simple: CFer's don't absorb fat soluble vitamins very well, which includes vitamin D. Vit D is essential for calcium absorption.

there are other issues as well, but this is a strong culprit.

saveferris2009
05-05-2009, 01:37 PM
osteoporosis is widely accepted within the CF community, however as said earlier, it's considered a far far 2nd or 3rd to lung issues.
<br />
<br />the problems are simple: CFer's don't absorb fat soluble vitamins very well, which includes vitamin D. Vit D is essential for calcium absorption.
<br />
<br />there are other issues as well, but this is a strong culprit.

CFHockeyMom
05-05-2009, 02:48 PM
Thx, Amy.

Sean's got clinic tomorrow so I'm going to make sure we ask about a bone density scan and a vitamin level check.

CFHockeyMom
05-05-2009, 02:48 PM
Thx, Amy.

Sean's got clinic tomorrow so I'm going to make sure we ask about a bone density scan and a vitamin level check.

CFHockeyMom
05-05-2009, 02:48 PM
Thx, Amy.

Sean's got clinic tomorrow so I'm going to make sure we ask about a bone density scan and a vitamin level check.

CFHockeyMom
05-05-2009, 02:48 PM
Thx, Amy.

Sean's got clinic tomorrow so I'm going to make sure we ask about a bone density scan and a vitamin level check.

CFHockeyMom
05-05-2009, 02:48 PM
Thx, Amy.
<br />
<br />Sean's got clinic tomorrow so I'm going to make sure we ask about a bone density scan and a vitamin level check.