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

[Buckeye]

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

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]

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

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]

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

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]

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

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]

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

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]

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

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]

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

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]

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

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]

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

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]

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

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]

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

<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]

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

<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]

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

<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]

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

<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]

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

<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]

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

<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]

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

<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]

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

<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]

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

<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]

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

<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)