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

MicheleGazelle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.
 
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