Jump to content
RemedySpot.com
Sign in to follow this  
Guest guest

osteoporosis

Rate this topic

Recommended Posts

Guest guest

Hello,

Well we have started yet another journey in our latest health issue.

My son Mark who is 22 went to his Dr and I mentioned he should have a bone

scan well our baseline turned out to be more than that, He had already shown

signs of severe bone loss. We were sent to an endocrine specialist and he is

now on Calcium twice daily and a multivitamin along with Androgel cream. (he

still has swallowing problems so I am already looking for a different Calcium

and vitamin the one's recommended were way too big) I should have seen it

coming. I might be saying goodbye to the " baby face " he has had for the last 22

years. I cannot believe how this latest issue has affected me I am a bit on

the emotional side over it. We'll see. Just thought I would share another

chapter.

Share this post


Link to post
Share on other sites
Guest guest

-

I found calcium capsules with added magnesium and vitamin D. Nate has to take

three of them a day, but they are much easier to get down then the huge calcium

pills.

And I can relate to the baby face issue. Nate has been small for soo long and

is now beginning to grow-thanks to the growth hormone. He gained about four

pounds and got an inch and a half taller since December. Major growth-still

super skinny and little but we can see those changes...

Barb-mom,(CHARGE)12 next Thursday, Rosie18

-------------- Original message ----------------------

From: KAV427@...

> Hello,

> Well we have started yet another journey in our latest health issue.

> My son Mark who is 22 went to his Dr and I mentioned he should have a bone

> scan well our baseline turned out to be more than that, He had already shown

> signs of severe bone loss. We were sent to an endocrine specialist and he is

> now on Calcium twice daily and a multivitamin along with Androgel cream. (he

> still has swallowing problems so I am already looking for a different Calcium

> and vitamin the one's recommended were way too big) I should have seen it

> coming. I might be saying goodbye to the " baby face " he has had for the last

22

> years. I cannot believe how this latest issue has affected me I am a bit on

> the emotional side over it. We'll see. Just thought I would share another

> chapter.

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Is there any caution in giving kids calcium? Aubrie doesn't get anything

extra at the moment. We've done a bone scan and I don't recall any comments

about poor bone density, but it seems that it would be good to be proactive

on this if there are no reasons not to.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: osteoporosis

Hi, I actually have found a liquid form of calcium/magnesium and

vitamin D at Whole Foods. It cherry flavor and is relatively cheap

($15) for about a months supply.

>

> -

> I found calcium capsules with added magnesium and vitamin D. Nate

has to take three of them a day, but they are much easier to get down

then the huge calcium pills.

> And I can relate to the baby face issue. Nate has been small for

soo long and is now beginning to grow-thanks to the growth hormone.

He gained about four pounds and got an inch and a half taller since

December. Major growth-still super skinny and little but we can see

those changes...

>

> Barb-mom,(CHARGE)12 next Thursday, Rosie18

>

>

>

> -------------- Original message ----------------------

> From: KAV427@...

> > Hello,

> > Well we have started yet another journey in our latest

health issue.

> > My son Mark who is 22 went to his Dr and I mentioned he should

have a bone

> > scan well our baseline turned out to be more than that, He had

already shown

> > signs of severe bone loss. We were sent to an endocrine

specialist and he is

> > now on Calcium twice daily and a multivitamin along with Androgel

cream. (he

> > still has swallowing problems so I am already looking for a

different Calcium

> > and vitamin the one's recommended were way too big) I should have

seen it

> > coming. I might be saying goodbye to the " baby face " he has had

for the last 22

> > years. I cannot believe how this latest issue has affected me I

am a bit on

> > the emotional side over it. We'll see. Just thought I would share

another

> > chapter.

> >

> >

> >

Share this post


Link to post
Share on other sites
Guest guest

Hi ,

We began the shots in 2001 when Jeff was 16. Yes, the changes were

gradual. I'm sorry, but I really don't know anything about the gel. I

think I'd talk to the Dr. and explain your concerns. Let me know how it

goes.

Smiles from,

Baker - Mom to Jeff (21 yrs. CHARGEr), Steve (almost 23 yrs.,

attending BYU/Provo, & getting married in 3 weeks), and others with families

of their own, providing me with 4 handsome, active grandsons, and 2

beautiful, curly-haired granddaughters, one a special angel with CdLS

(Cornelia de Lange Syndrome).

Idaho, USA

http://www.caringbridge.org/me/jeffbaker

Re: osteoporosis

> ,

> They are recommending the gel for Mark. I can tell you right now

> I

> will not be able to deal with the behaviors. He is on 3 behavior meds

> already

> and we finally have them in check. How old was Jeff when he had the

> shots?

> Is the gel something different? I might call his family Dr on Monday. I

> am a

> bit nervous about it all. Is the change gradual?

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

bonnie havew u ever thought of giving patty lactose free milk soemtimes i

drink a bit lf that and its godo for me doesnt do me harm xxxxx

>

> Michele,

>

> I don't know about Aubrie but Patty was allergic to milk so she couldn't

> drink it. We supplemented her with giving her calcium but honestly

> sometimes I

> forgot to give it to her. We also bought things with calcium added in it

> like

> orange juice and tums with calcium. Do whatever you can think of to build

> up

> her bones to let her grow well. Calcium isn't only important when our

> children

> are older, it is important from infancy on.

>

>

> Bonnie

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

,

Could you share more what you have learned about preventing osteoporosis

besides sex hormones????

I would love to hear.

Kim

> Hi ,

> I'm glad you found out about the osteoporosis, but sorry that it was

> not better news. There is a liquid calcium and you can break vitamins in

> half to make them go down easier. As to the Androgel cream, what was the

> purpose of prescribing it? I only ask because of what we experienced with

> Jeff. I think we've already decided that Jeff and Mark are a lot alike

> developmentally. When I took Jeff to the Endocrinologist, I made it very

> clear that we were only there to prevent osteoporosis. He prescribed

> Testosterone injections because Jeff hadn't started puberty and since the

> bone mass thickens during puberty, he felt that was the most natural way to

> solve the problem. I didn't know then, what I know now. Jeff had no

> concept of puberty and didn't know that he was different in any way. The

> Testosterone did what it was suppose to do as far as putting him into

> puberty. I then had a young man that was still a child mentally, in a man's

> body. Since Jeff wasn't completely toilet trained, all the pubic hair made

> things more difficult. I have to shave him daily as he has a very heavy

> beard growth. Plus Jeff became much stronger muscle wise. I now know that

> there are other things they can do to prevent osteoporosis. I guess what

> I'm trying to say is if Mark isn't aware that he is different and it doesn't

> bother him, you might want to think twice about introducing him to hormones

> that will bring about puberty. Just know that there are other options to

> prevent osteoporosis.

> Smiles from,

> Baker - Mom to Jeff (21 yrs. CHARGEr), Steve (22 yrs. & attending BYU/

> Provo, & getting married in 3 weeks), and others with families of their own,

> providing me with 4 handsome, active grandsons, and 2 beautiful,

> curly-haired granddaughters,

> one a special angel with CdLS (Cornelia de Lange Syndrome).

> Idaho, USA

> http://www.caringbridge.org/me/jeffbaker

>

>

> osteoporosis

>

>

>> Hello,

>> Well we have started yet another journey in our latest health

>> issue.

>> My son Mark who is 22 went to his Dr and I mentioned he should have a

>> bone

>> scan well our baseline turned out to be more than that, He had already

>> shown

>> signs of severe bone loss. We were sent to an endocrine specialist and he

>> is

>> now on Calcium twice daily and a multivitamin along with Androgel cream.

>> (he

>> still has swallowing problems so I am already looking for a different

>> Calcium

>> and vitamin the one's recommended were way too big) I should have seen it

>> coming. I might be saying goodbye to the " baby face " he has had for the

>> last 22

>> years. I cannot believe how this latest issue has affected me I am a bit

>> on

>> the emotional side over it. We'll see. Just thought I would share another

>> chapter.

>>

>>

>>

Share this post


Link to post
Share on other sites
Guest guest

,

Could you share more what you have learned about preventing osteoporosis

besides sex hormones????

I would love to hear.

Kim

> Hi ,

> I'm glad you found out about the osteoporosis, but sorry that it was

> not better news. There is a liquid calcium and you can break vitamins in

> half to make them go down easier. As to the Androgel cream, what was the

> purpose of prescribing it? I only ask because of what we experienced with

> Jeff. I think we've already decided that Jeff and Mark are a lot alike

> developmentally. When I took Jeff to the Endocrinologist, I made it very

> clear that we were only there to prevent osteoporosis. He prescribed

> Testosterone injections because Jeff hadn't started puberty and since the

> bone mass thickens during puberty, he felt that was the most natural way to

> solve the problem. I didn't know then, what I know now. Jeff had no

> concept of puberty and didn't know that he was different in any way. The

> Testosterone did what it was suppose to do as far as putting him into

> puberty. I then had a young man that was still a child mentally, in a man's

> body. Since Jeff wasn't completely toilet trained, all the pubic hair made

> things more difficult. I have to shave him daily as he has a very heavy

> beard growth. Plus Jeff became much stronger muscle wise. I now know that

> there are other things they can do to prevent osteoporosis. I guess what

> I'm trying to say is if Mark isn't aware that he is different and it doesn't

> bother him, you might want to think twice about introducing him to hormones

> that will bring about puberty. Just know that there are other options to

> prevent osteoporosis.

> Smiles from,

> Baker - Mom to Jeff (21 yrs. CHARGEr), Steve (22 yrs. & attending BYU/

> Provo, & getting married in 3 weeks), and others with families of their own,

> providing me with 4 handsome, active grandsons, and 2 beautiful,

> curly-haired granddaughters,

> one a special angel with CdLS (Cornelia de Lange Syndrome).

> Idaho, USA

> http://www.caringbridge.org/me/jeffbaker

>

>

> osteoporosis

>

>

>> Hello,

>> Well we have started yet another journey in our latest health

>> issue.

>> My son Mark who is 22 went to his Dr and I mentioned he should have a

>> bone

>> scan well our baseline turned out to be more than that, He had already

>> shown

>> signs of severe bone loss. We were sent to an endocrine specialist and he

>> is

>> now on Calcium twice daily and a multivitamin along with Androgel cream.

>> (he

>> still has swallowing problems so I am already looking for a different

>> Calcium

>> and vitamin the one's recommended were way too big) I should have seen it

>> coming. I might be saying goodbye to the " baby face " he has had for the

>> last 22

>> years. I cannot believe how this latest issue has affected me I am a bit

>> on

>> the emotional side over it. We'll see. Just thought I would share another

>> chapter.

>>

>>

>>

Share this post


Link to post
Share on other sites
Guest guest

,

Could you share more what you have learned about preventing osteoporosis

besides sex hormones????

I would love to hear.

Kim

> Hi ,

> I'm glad you found out about the osteoporosis, but sorry that it was

> not better news. There is a liquid calcium and you can break vitamins in

> half to make them go down easier. As to the Androgel cream, what was the

> purpose of prescribing it? I only ask because of what we experienced with

> Jeff. I think we've already decided that Jeff and Mark are a lot alike

> developmentally. When I took Jeff to the Endocrinologist, I made it very

> clear that we were only there to prevent osteoporosis. He prescribed

> Testosterone injections because Jeff hadn't started puberty and since the

> bone mass thickens during puberty, he felt that was the most natural way to

> solve the problem. I didn't know then, what I know now. Jeff had no

> concept of puberty and didn't know that he was different in any way. The

> Testosterone did what it was suppose to do as far as putting him into

> puberty. I then had a young man that was still a child mentally, in a man's

> body. Since Jeff wasn't completely toilet trained, all the pubic hair made

> things more difficult. I have to shave him daily as he has a very heavy

> beard growth. Plus Jeff became much stronger muscle wise. I now know that

> there are other things they can do to prevent osteoporosis. I guess what

> I'm trying to say is if Mark isn't aware that he is different and it doesn't

> bother him, you might want to think twice about introducing him to hormones

> that will bring about puberty. Just know that there are other options to

> prevent osteoporosis.

> Smiles from,

> Baker - Mom to Jeff (21 yrs. CHARGEr), Steve (22 yrs. & attending BYU/

> Provo, & getting married in 3 weeks), and others with families of their own,

> providing me with 4 handsome, active grandsons, and 2 beautiful,

> curly-haired granddaughters,

> one a special angel with CdLS (Cornelia de Lange Syndrome).

> Idaho, USA

> http://www.caringbridge.org/me/jeffbaker

>

>

> osteoporosis

>

>

>> Hello,

>> Well we have started yet another journey in our latest health

>> issue.

>> My son Mark who is 22 went to his Dr and I mentioned he should have a

>> bone

>> scan well our baseline turned out to be more than that, He had already

>> shown

>> signs of severe bone loss. We were sent to an endocrine specialist and he

>> is

>> now on Calcium twice daily and a multivitamin along with Androgel cream.

>> (he

>> still has swallowing problems so I am already looking for a different

>> Calcium

>> and vitamin the one's recommended were way too big) I should have seen it

>> coming. I might be saying goodbye to the " baby face " he has had for the

>> last 22

>> years. I cannot believe how this latest issue has affected me I am a bit

>> on

>> the emotional side over it. We'll see. Just thought I would share another

>> chapter.

>>

>>

>>

Share this post


Link to post
Share on other sites
Guest guest

,

My advice to you is to do your own research, and to go with what you think

is right for Mark, not what the specialist says. You need to look at all

the impacts on Mark, not just the osteoporosis. He and you have to live

with the impact of whatever course of treatment you choose to do or not do,

not the doctor!

Kim

> ,

> I am very concerned about giving Mark the male hormone. He is

> developmentally delayed and will never be independent. His family Dr was not

> sure she would want to go that route, the specialist ordered it. I have many

> mixed emotions about it. My Mark this last year had a huge growth spurt. He

> is

> 5'5 1/2 and weighs 166! HE is bigger than I am now. He is 22. I am a bit

> shook up over the whole thing.

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

We will keep on learning.

Did they do Jeff's testosterone primarily as prevention for osteoporosis or

simply to replace what was lacking and provide " benefit " in that way? Was

it before the osteoporosis diagnosis or after (my time frame says well

before)

Kim

> Hi Kim,

> Actually, I have learned very little. Jeff was diagnosed in 2003 with

> borderline osteoporosis. Currently we are giving him added calcium and he

> wears a weighted vest for most of the day. The vest actually serves two

> purposes...1) It helps with weight bearing for the osteoporosis. (Exercise

> helps to strengthen the bones but since Jeff is limited with the exercise he

> can do, the vest helps.) 2) It helps with his sensory integration issues.

> The next Dexa scan he has (which I will be setting us soon) will tell us the

> next step. I have been assured by the Dr. that either Fosamax or Actonel

> will keep the osteoporosis from getting worse. (There might be others too,

> but those were the two he mentioned.) It won't undo any damage already

> done, but it will prevent it from getting worse. Jeff is not on either of

> these medications at this point, but like I said, we will be checking the

> next Dexa scan results to see if and when they are needed.

> Smiles from,

> Baker - Mom to Jeff (21 yrs. CHARGEr), Steve (almost 23 yrs.,

> attending BYU/Provo, & getting married in 10 days), and others with families

> of their own, providing me with 4 handsome, active grandsons, and 2

> beautiful, curly-haired granddaughters, one a special angel with CdLS

> (Cornelia de Lange Syndrome).

> Idaho, USA

> http://www.caringbridge.org/me/jeffbaker

>

> osteoporosis

>>>

>>>

>>>> Hello,

>>>> Well we have started yet another journey in our latest health

>>>> issue.

>>>> My son Mark who is 22 went to his Dr and I mentioned he should have a

>>>> bone

>>>> scan well our baseline turned out to be more than that, He had already

>>>> shown

>>>> signs of severe bone loss. We were sent to an endocrine specialist and

>>>> he

>>>> is

>>>> now on Calcium twice daily and a multivitamin along with Androgel

>>>> cream.

>>>> (he

>>>> still has swallowing problems so I am already looking for a different

>>>> Calcium

>>>> and vitamin the one's recommended were way too big) I should have seen

>>>> it

>>>> coming. I might be saying goodbye to the " baby face " he has had for the

>>>> last 22

>>>> years. I cannot believe how this latest issue has affected me I am a

>>>> bit

>>>> on

>>>> the emotional side over it. We'll see. Just thought I would share

>>>> another

>>>> chapter.

>>>>

>>>>

>>>>

Share this post


Link to post
Share on other sites
Guest guest

Hi ,

Thank you for the warning. Jeff does indeed have reflux for which he

takes Previcid. Also the calcium that he takes is Tums. If and when he

needs the osteoporosis meds, I will definitely ask about this. I know that

you can get the type of Fosamax or Actonel that you only take once a week.

Hopefully that will help. Jeff can't tell me when he's having problems or

if he's in pain. I just have to go by reading his behaviors. I value so

much what the other Chargers say about how they feel concerning things like

this. So thank you very much for the heads up.

Smiles from,

Baker - Mom to Jeff (21 yrs. CHARGEr), Steve (almost 23 yrs.,

attending BYU/Provo, & getting married in 10 days), and others with families

of their own, providing me with 4 handsome, active grandsons, and 2

beautiful, curly-haired granddaughters, one a special angel with CdLS

(Cornelia de Lange Syndrome).

Idaho, USA

http://www.caringbridge.org/me/jeffbaker

Re: osteoporosis

> ,

> Just a quick word re; reflux, acid indigestion and osteo meds. We're on

> a

> little merry-go-round now, as seems to have some acid/reflux

> problems,

> and she has osteoporosis.

> I was told the Rx meds for osteo aggrevate reflux. The reflux meds give

> her headaches

> ..Duh!

> Well, that gave ME a headache, probably from looking at them cross-eyed !

> so, I put her on TUMS 2x daily while I gear up to having them tell me this

> catch 22 all over again-LOL.

> So, hopefully, Jeff has an iron stomach. Oh yeah, I forgot about

> iron.........next trip.

>

> in Ma.

> Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12

> years now)

>

Share this post


Link to post
Share on other sites
Guest guest

Kim,

My purpose was purely to prevent osteoporosis and nothing more. I made

that very clear to the Endo. He stated that this was the most natural way

to go about PREVENTING it. This was 2 years BEFORE he was diagnosed with

borderline osteoporosis.

Smiles from,

Baker - Mom to Jeff (21 yrs. CHARGEr), Steve (almost 23 yrs.,

attending BYU/Provo, & getting married in 10 days), and others with families

of their own, providing me with 4 handsome, active grandsons, and 2

beautiful,

curly-haired granddaughters, one a special angel with CdLS

(Cornelia de Lange Syndrome).

Idaho, USA

http://www.caringbridge.org/me/jeffbaker

Re: osteoporosis

> We will keep on learning.

>

> Did they do Jeff's testosterone primarily as prevention for osteoporosis

> or

> simply to replace what was lacking and provide " benefit " in that way? Was

> it before the osteoporosis diagnosis or after (my time frame says well

> before)

>

> Kim

Share this post


Link to post
Share on other sites
Guest guest

Kim,

My purpose was purely to prevent osteoporosis and nothing more. I made

that very clear to the Endo. He stated that this was the most natural way

to go about PREVENTING it. This was 2 years BEFORE he was diagnosed with

borderline osteoporosis.

Smiles from,

Baker - Mom to Jeff (21 yrs. CHARGEr), Steve (almost 23 yrs.,

attending BYU/Provo, & getting married in 10 days), and others with families

of their own, providing me with 4 handsome, active grandsons, and 2

beautiful,

curly-haired granddaughters, one a special angel with CdLS

(Cornelia de Lange Syndrome).

Idaho, USA

http://www.caringbridge.org/me/jeffbaker

Re: osteoporosis

> We will keep on learning.

>

> Did they do Jeff's testosterone primarily as prevention for osteoporosis

> or

> simply to replace what was lacking and provide " benefit " in that way? Was

> it before the osteoporosis diagnosis or after (my time frame says well

> before)

>

> Kim

Share this post


Link to post
Share on other sites
Guest guest

Kim,

My purpose was purely to prevent osteoporosis and nothing more. I made

that very clear to the Endo. He stated that this was the most natural way

to go about PREVENTING it. This was 2 years BEFORE he was diagnosed with

borderline osteoporosis.

Smiles from,

Baker - Mom to Jeff (21 yrs. CHARGEr), Steve (almost 23 yrs.,

attending BYU/Provo, & getting married in 10 days), and others with families

of their own, providing me with 4 handsome, active grandsons, and 2

beautiful,

curly-haired granddaughters, one a special angel with CdLS

(Cornelia de Lange Syndrome).

Idaho, USA

http://www.caringbridge.org/me/jeffbaker

Re: osteoporosis

> We will keep on learning.

>

> Did they do Jeff's testosterone primarily as prevention for osteoporosis

> or

> simply to replace what was lacking and provide " benefit " in that way? Was

> it before the osteoporosis diagnosis or after (my time frame says well

> before)

>

> Kim

Share this post


Link to post
Share on other sites
Guest guest

I am glad you can still sign Smiles from, because I know that this has made

you life much more complex than it needed to be. Kim

> Kim,

> My purpose was purely to prevent osteoporosis and nothing more. I made

> that very clear to the Endo. He stated that this was the most natural way

> to go about PREVENTING it. This was 2 years BEFORE he was diagnosed with

> borderline osteoporosis.

> Smiles from,

> Baker - Mom to Jeff (21 yrs. CHARGEr), Steve (almost 23 yrs.,

> attending BYU/Provo, & getting married in 10 days), and others with families

> of their own, providing me with 4 handsome, active grandsons, and 2

> beautiful,

> curly-haired granddaughters, one a special angel with CdLS

> (Cornelia de Lange Syndrome).

> Idaho, USA

> http://www.caringbridge.org/me/jeffbaker

>

>

> Re: osteoporosis

>

>

>> We will keep on learning.

>>

>> Did they do Jeff's testosterone primarily as prevention for osteoporosis

>> or

>> simply to replace what was lacking and provide " benefit " in that way? Was

>> it before the osteoporosis diagnosis or after (my time frame says well

>> before)

>>

>> Kim

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

Share this post


Link to post
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...