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Hi,

I have a question about osteoporosis. I wrote in some time ago about

the use of estrogen. We decided to put on the estrogen because

a bone age study showed that she has the begining of osteoporosis. A

year later they decided to bring on her period because taking the

estrogen was building a linning. Well needles to say was in no

way ready for this. We just can not make her understand that this is

normal, and she will never understand. She is just not at that point.

I called the Dr. and told her that we had to find another way to deal

with this. She had have a Dexa Scan done. Based on that she

said that she is at high risk for fracture. She now wants to try

Evista. Possible side effect is hot flases not to metion it is a

adult drug.

My question is is very small. She 65 pounds and is 4 " 1' she is

19. Her bones are not going to be of a 19 year old. They say that she

is looing bone but I don't understand how they can compare this test

she is the size of a 6 to 8 year old. This is the first Dexa Scan that

she has had done so we have nothing to compare to. Maybe she has

always been this way. We just don't know.

I just don't know what to do next. All I want is for her to be

healthy and happy. I keep throwing this drugs at her and then try to

make her understand why she has side effect.

The estrogen is no longer a option I can't put her through that again.

She spent 4 days of throwing up. Lost 5 pounds which was not water

she was 65 pounds and went down to 60. Her sugar levels went sky

high. And All she did was cry and beg me to make her period go away.

Has anyone else had their children tested for osteoporosis?

Any input anyone has I would be very thankful for.

Doris Behan (Mom to 19)

Rochester NY

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Guest guest

Hi Doris.

I just finished reading " What your doctor may not tell you about

premenopause " by Dr. Lee and Dr. Henley. This book does a

marvelous job about explaining how the female hormones work in our bodies,

not just in the menstrual cycle, but how they impact our overall health,

throughout our life span. He also does an excellent job of explaining why

estrogen and progesterone given in pill form, do not work the same way.

Basically the chemical structure is slightly different than that which is

made in our bodies. This structural difference, cause massive confusion in

our bodies, leading to all sorts of side effects, such as those you are

describing in . The book covers many other avenues of regulating

hormone balance, natural progesterone (a cream that has the same chemical

structure as progesterone made in the body), diet, supplements etc...

Perhaps there will be some clues for you there on what to do next. The book

does cover the connection between hormones and bone loss as well. Although

the book is targeted towards women 30 -50ish, the information seems

pertinent to all women. (I think young women should read it before they

ever decide to go on the pill or not.)

Kim

----------

>

>To: CHARGE

>Subject: Osteoporosis

>Date: Mon, Aug 5, 2002, 8:40 AM

>

> Hi,

>

> I have a question about osteoporosis. I wrote in some time ago about

> the use of estrogen. We decided to put on the estrogen because

> a bone age study showed that she has the begining of osteoporosis. A

> year later they decided to bring on her period because taking the

> estrogen was building a linning. Well needles to say was in no

> way ready for this. We just can not make her understand that this is

> normal, and she will never understand. She is just not at that point.

>

> I called the Dr. and told her that we had to find another way to deal

> with this. She had have a Dexa Scan done. Based on that she

> said that she is at high risk for fracture. She now wants to try

> Evista. Possible side effect is hot flases not to metion it is a

> adult drug.

>

> My question is is very small. She 65 pounds and is 4 " 1' she is

> 19. Her bones are not going to be of a 19 year old. They say that she

> is looing bone but I don't understand how they can compare this test

> she is the size of a 6 to 8 year old. This is the first Dexa Scan that

> she has had done so we have nothing to compare to. Maybe she has

> always been this way. We just don't know.

>

> I just don't know what to do next. All I want is for her to be

> healthy and happy. I keep throwing this drugs at her and then try to

> make her understand why she has side effect.

>

> The estrogen is no longer a option I can't put her through that again.

> She spent 4 days of throwing up. Lost 5 pounds which was not water

> she was 65 pounds and went down to 60. Her sugar levels went sky

> high. And All she did was cry and beg me to make her period go away.

>

> Has anyone else had their children tested for osteoporosis?

>

> Any input anyone has I would be very thankful for.

>

> Doris Behan (Mom to 19)

>

> Rochester NY

>

>

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

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

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Share on other sites

Guest guest

Hi Doris.

I just finished reading " What your doctor may not tell you about

premenopause " by Dr. Lee and Dr. Henley. This book does a

marvelous job about explaining how the female hormones work in our bodies,

not just in the menstrual cycle, but how they impact our overall health,

throughout our life span. He also does an excellent job of explaining why

estrogen and progesterone given in pill form, do not work the same way.

Basically the chemical structure is slightly different than that which is

made in our bodies. This structural difference, cause massive confusion in

our bodies, leading to all sorts of side effects, such as those you are

describing in . The book covers many other avenues of regulating

hormone balance, natural progesterone (a cream that has the same chemical

structure as progesterone made in the body), diet, supplements etc...

Perhaps there will be some clues for you there on what to do next. The book

does cover the connection between hormones and bone loss as well. Although

the book is targeted towards women 30 -50ish, the information seems

pertinent to all women. (I think young women should read it before they

ever decide to go on the pill or not.)

Kim

----------

>

>To: CHARGE

>Subject: Osteoporosis

>Date: Mon, Aug 5, 2002, 8:40 AM

>

> Hi,

>

> I have a question about osteoporosis. I wrote in some time ago about

> the use of estrogen. We decided to put on the estrogen because

> a bone age study showed that she has the begining of osteoporosis. A

> year later they decided to bring on her period because taking the

> estrogen was building a linning. Well needles to say was in no

> way ready for this. We just can not make her understand that this is

> normal, and she will never understand. She is just not at that point.

>

> I called the Dr. and told her that we had to find another way to deal

> with this. She had have a Dexa Scan done. Based on that she

> said that she is at high risk for fracture. She now wants to try

> Evista. Possible side effect is hot flases not to metion it is a

> adult drug.

>

> My question is is very small. She 65 pounds and is 4 " 1' she is

> 19. Her bones are not going to be of a 19 year old. They say that she

> is looing bone but I don't understand how they can compare this test

> she is the size of a 6 to 8 year old. This is the first Dexa Scan that

> she has had done so we have nothing to compare to. Maybe she has

> always been this way. We just don't know.

>

> I just don't know what to do next. All I want is for her to be

> healthy and happy. I keep throwing this drugs at her and then try to

> make her understand why she has side effect.

>

> The estrogen is no longer a option I can't put her through that again.

> She spent 4 days of throwing up. Lost 5 pounds which was not water

> she was 65 pounds and went down to 60. Her sugar levels went sky

> high. And All she did was cry and beg me to make her period go away.

>

> Has anyone else had their children tested for osteoporosis?

>

> Any input anyone has I would be very thankful for.

>

> Doris Behan (Mom to 19)

>

> Rochester NY

>

>

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

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

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Share on other sites

Guest guest

Hi Doris.

I just finished reading " What your doctor may not tell you about

premenopause " by Dr. Lee and Dr. Henley. This book does a

marvelous job about explaining how the female hormones work in our bodies,

not just in the menstrual cycle, but how they impact our overall health,

throughout our life span. He also does an excellent job of explaining why

estrogen and progesterone given in pill form, do not work the same way.

Basically the chemical structure is slightly different than that which is

made in our bodies. This structural difference, cause massive confusion in

our bodies, leading to all sorts of side effects, such as those you are

describing in . The book covers many other avenues of regulating

hormone balance, natural progesterone (a cream that has the same chemical

structure as progesterone made in the body), diet, supplements etc...

Perhaps there will be some clues for you there on what to do next. The book

does cover the connection between hormones and bone loss as well. Although

the book is targeted towards women 30 -50ish, the information seems

pertinent to all women. (I think young women should read it before they

ever decide to go on the pill or not.)

Kim

----------

>

>To: CHARGE

>Subject: Osteoporosis

>Date: Mon, Aug 5, 2002, 8:40 AM

>

> Hi,

>

> I have a question about osteoporosis. I wrote in some time ago about

> the use of estrogen. We decided to put on the estrogen because

> a bone age study showed that she has the begining of osteoporosis. A

> year later they decided to bring on her period because taking the

> estrogen was building a linning. Well needles to say was in no

> way ready for this. We just can not make her understand that this is

> normal, and she will never understand. She is just not at that point.

>

> I called the Dr. and told her that we had to find another way to deal

> with this. She had have a Dexa Scan done. Based on that she

> said that she is at high risk for fracture. She now wants to try

> Evista. Possible side effect is hot flases not to metion it is a

> adult drug.

>

> My question is is very small. She 65 pounds and is 4 " 1' she is

> 19. Her bones are not going to be of a 19 year old. They say that she

> is looing bone but I don't understand how they can compare this test

> she is the size of a 6 to 8 year old. This is the first Dexa Scan that

> she has had done so we have nothing to compare to. Maybe she has

> always been this way. We just don't know.

>

> I just don't know what to do next. All I want is for her to be

> healthy and happy. I keep throwing this drugs at her and then try to

> make her understand why she has side effect.

>

> The estrogen is no longer a option I can't put her through that again.

> She spent 4 days of throwing up. Lost 5 pounds which was not water

> she was 65 pounds and went down to 60. Her sugar levels went sky

> high. And All she did was cry and beg me to make her period go away.

>

> Has anyone else had their children tested for osteoporosis?

>

> Any input anyone has I would be very thankful for.

>

> Doris Behan (Mom to 19)

>

> Rochester NY

>

>

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

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

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Guest guest

Dr. Kim Blake wanted to hear from parents of older children with CHARGE as she

was doing a study on the onset

of osteoporosis in young adults with CHARGE; usually in those who did not take

growth hormones early on.

Her e-mail is Kblake@...

Your doctor could confer with Kirk, Consultant Pediatric Endocroinologist

from , Princess of

Wales Children's Hospital in Birmingham; UK

.Kirk@...

044

who is familiar with the issues in CHARGE, and will probably also be at the OHIO

conference in 2003

ANN GLOYN, Specialist Teacher, Canada

jdsb03 wrote:

> Hi,

>

> I have a question about osteoporosis. I wrote in some time ago about

> the use of estrogen. We decided to put on the estrogen because

> a bone age study showed that she has the begining of osteoporosis. A

> year later they decided to bring on her period because taking the

> estrogen was building a linning. Well needles to say was in no

> way ready for this. We just can not make her understand that this is

> normal, and she will never understand. She is just not at that point.

>

> I called the Dr. and told her that we had to find another way to deal

> with this. She had have a Dexa Scan done. Based on that she

> said that she is at high risk for fracture. She now wants to try

> Evista. Possible side effect is hot flases not to metion it is a

> adult drug.

>

> My question is is very small. She 65 pounds and is 4 " 1' she is

> 19. Her bones are not going to be of a 19 year old. They say that she

> is looing bone but I don't understand how they can compare this test

> she is the size of a 6 to 8 year old. This is the first Dexa Scan that

> she has had done so we have nothing to compare to. Maybe she has

> always been this way. We just don't know.

>

> I just don't know what to do next. All I want is for her to be

> healthy and happy. I keep throwing this drugs at her and then try to

> make her understand why she has side effect.

>

> The estrogen is no longer a option I can't put her through that again.

> She spent 4 days of throwing up. Lost 5 pounds which was not water

> she was 65 pounds and went down to 60. Her sugar levels went sky

> high. And All she did was cry and beg me to make her period go away.

>

> Has anyone else had their children tested for osteoporosis?

>

> Any input anyone has I would be very thankful for.

>

> Doris Behan (Mom to 19)

>

> Rochester NY

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Share on other sites

Guest guest

Dr. Kim Blake wanted to hear from parents of older children with CHARGE as she

was doing a study on the onset

of osteoporosis in young adults with CHARGE; usually in those who did not take

growth hormones early on.

Her e-mail is Kblake@...

Your doctor could confer with Kirk, Consultant Pediatric Endocroinologist

from , Princess of

Wales Children's Hospital in Birmingham; UK

.Kirk@...

044

who is familiar with the issues in CHARGE, and will probably also be at the OHIO

conference in 2003

ANN GLOYN, Specialist Teacher, Canada

jdsb03 wrote:

> Hi,

>

> I have a question about osteoporosis. I wrote in some time ago about

> the use of estrogen. We decided to put on the estrogen because

> a bone age study showed that she has the begining of osteoporosis. A

> year later they decided to bring on her period because taking the

> estrogen was building a linning. Well needles to say was in no

> way ready for this. We just can not make her understand that this is

> normal, and she will never understand. She is just not at that point.

>

> I called the Dr. and told her that we had to find another way to deal

> with this. She had have a Dexa Scan done. Based on that she

> said that she is at high risk for fracture. She now wants to try

> Evista. Possible side effect is hot flases not to metion it is a

> adult drug.

>

> My question is is very small. She 65 pounds and is 4 " 1' she is

> 19. Her bones are not going to be of a 19 year old. They say that she

> is looing bone but I don't understand how they can compare this test

> she is the size of a 6 to 8 year old. This is the first Dexa Scan that

> she has had done so we have nothing to compare to. Maybe she has

> always been this way. We just don't know.

>

> I just don't know what to do next. All I want is for her to be

> healthy and happy. I keep throwing this drugs at her and then try to

> make her understand why she has side effect.

>

> The estrogen is no longer a option I can't put her through that again.

> She spent 4 days of throwing up. Lost 5 pounds which was not water

> she was 65 pounds and went down to 60. Her sugar levels went sky

> high. And All she did was cry and beg me to make her period go away.

>

> Has anyone else had their children tested for osteoporosis?

>

> Any input anyone has I would be very thankful for.

>

> Doris Behan (Mom to 19)

>

> Rochester NY

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Share on other sites

Guest guest

Dr. Kim Blake wanted to hear from parents of older children with CHARGE as she

was doing a study on the onset

of osteoporosis in young adults with CHARGE; usually in those who did not take

growth hormones early on.

Her e-mail is Kblake@...

Your doctor could confer with Kirk, Consultant Pediatric Endocroinologist

from , Princess of

Wales Children's Hospital in Birmingham; UK

.Kirk@...

044

who is familiar with the issues in CHARGE, and will probably also be at the OHIO

conference in 2003

ANN GLOYN, Specialist Teacher, Canada

jdsb03 wrote:

> Hi,

>

> I have a question about osteoporosis. I wrote in some time ago about

> the use of estrogen. We decided to put on the estrogen because

> a bone age study showed that she has the begining of osteoporosis. A

> year later they decided to bring on her period because taking the

> estrogen was building a linning. Well needles to say was in no

> way ready for this. We just can not make her understand that this is

> normal, and she will never understand. She is just not at that point.

>

> I called the Dr. and told her that we had to find another way to deal

> with this. She had have a Dexa Scan done. Based on that she

> said that she is at high risk for fracture. She now wants to try

> Evista. Possible side effect is hot flases not to metion it is a

> adult drug.

>

> My question is is very small. She 65 pounds and is 4 " 1' she is

> 19. Her bones are not going to be of a 19 year old. They say that she

> is looing bone but I don't understand how they can compare this test

> she is the size of a 6 to 8 year old. This is the first Dexa Scan that

> she has had done so we have nothing to compare to. Maybe she has

> always been this way. We just don't know.

>

> I just don't know what to do next. All I want is for her to be

> healthy and happy. I keep throwing this drugs at her and then try to

> make her understand why she has side effect.

>

> The estrogen is no longer a option I can't put her through that again.

> She spent 4 days of throwing up. Lost 5 pounds which was not water

> she was 65 pounds and went down to 60. Her sugar levels went sky

> high. And All she did was cry and beg me to make her period go away.

>

> Has anyone else had their children tested for osteoporosis?

>

> Any input anyone has I would be very thankful for.

>

> Doris Behan (Mom to 19)

>

> Rochester NY

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Share on other sites

Guest guest

um ill try to explain what my doctor was telling me jus the other

day. I have a " bone structure and density " of an eleven year old,

but " toerh parts of my body are nineteen " if you know what i mean. so

you can get osteoprosis becuase of that i have been on HRT since i

was about twelve, and jus wnet on to double the dose (my new doctors

is not happy with my previous doctor for not viving me enough) and i

stilldotn have a proper level of bone density

ugh im not making sense :)

Belinda 19 ye CHARGEr

> Hi Doris.

>

> I just finished reading " What your doctor may not tell you about

> premenopause " by Dr. Lee and Dr. Henley. This book does

a

> marvelous job about explaining how the female hormones work in our

bodies,

> not just in the menstrual cycle, but how they impact our overall

health,

> throughout our life span. He also does an excellent job of

explaining why

> estrogen and progesterone given in pill form, do not work the same

way.

> Basically the chemical structure is slightly different than that

which is

> made in our bodies. This structural difference, cause massive

confusion in

> our bodies, leading to all sorts of side effects, such as those you

are

> describing in . The book covers many other avenues of

regulating

> hormone balance, natural progesterone (a cream that has the same

chemical

> structure as progesterone made in the body), diet, supplements

etc...

> Perhaps there will be some clues for you there on what to do next.

The book

> does cover the connection between hormones and bone loss as well.

Although

> the book is targeted towards women 30 -50ish, the information seems

> pertinent to all women. (I think young women should read it before

they

> ever decide to go on the pill or not.)

>

> Kim

>

>

>

> ----------

> >From: " jdsb03 " <dbehan@r...>

> >To: CHARGE@y...

> >Subject: Osteoporosis

> >Date: Mon, Aug 5, 2002, 8:40 AM

> >

>

> > Hi,

> >

> > I have a question about osteoporosis. I wrote in some time ago

about

> > the use of estrogen. We decided to put on the estrogen

because

> > a bone age study showed that she has the begining of

osteoporosis. A

> > year later they decided to bring on her period because taking the

> > estrogen was building a linning. Well needles to say was

in no

> > way ready for this. We just can not make her understand that

this is

> > normal, and she will never understand. She is just not at that

point.

> >

> > I called the Dr. and told her that we had to find another way to

deal

> > with this. She had have a Dexa Scan done. Based on that

she

> > said that she is at high risk for fracture. She now wants to try

> > Evista. Possible side effect is hot flases not to metion it is a

> > adult drug.

> >

> > My question is is very small. She 65 pounds and is 4 " 1'

she is

> > 19. Her bones are not going to be of a 19 year old. They say

that she

> > is looing bone but I don't understand how they can compare this

test

> > she is the size of a 6 to 8 year old. This is the first Dexa Scan

that

> > she has had done so we have nothing to compare to. Maybe she has

> > always been this way. We just don't know.

> >

> > I just don't know what to do next. All I want is for her to be

> > healthy and happy. I keep throwing this drugs at her and then

try to

> > make her understand why she has side effect.

> >

> > The estrogen is no longer a option I can't put her through that

again.

> > She spent 4 days of throwing up. Lost 5 pounds which was not

water

> > she was 65 pounds and went down to 60. Her sugar levels went sky

> > high. And All she did was cry and beg me to make her period go

away.

> >

> > Has anyone else had their children tested for osteoporosis?

> >

> > Any input anyone has I would be very thankful for.

> >

> > Doris Behan (Mom to 19)

> >

> > Rochester NY

> >

> >

> > Membership of this email support groups does not constitute

membership in

> > the CHARGE Syndrome Foundation.

> > For information about the CHARGE Syndrome

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

> > please contact marion@c... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

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

> >

> >

> >

Link to comment
Share on other sites

Guest guest

um ill try to explain what my doctor was telling me jus the other

day. I have a " bone structure and density " of an eleven year old,

but " toerh parts of my body are nineteen " if you know what i mean. so

you can get osteoprosis becuase of that i have been on HRT since i

was about twelve, and jus wnet on to double the dose (my new doctors

is not happy with my previous doctor for not viving me enough) and i

stilldotn have a proper level of bone density

ugh im not making sense :)

Belinda 19 ye CHARGEr

> Hi Doris.

>

> I just finished reading " What your doctor may not tell you about

> premenopause " by Dr. Lee and Dr. Henley. This book does

a

> marvelous job about explaining how the female hormones work in our

bodies,

> not just in the menstrual cycle, but how they impact our overall

health,

> throughout our life span. He also does an excellent job of

explaining why

> estrogen and progesterone given in pill form, do not work the same

way.

> Basically the chemical structure is slightly different than that

which is

> made in our bodies. This structural difference, cause massive

confusion in

> our bodies, leading to all sorts of side effects, such as those you

are

> describing in . The book covers many other avenues of

regulating

> hormone balance, natural progesterone (a cream that has the same

chemical

> structure as progesterone made in the body), diet, supplements

etc...

> Perhaps there will be some clues for you there on what to do next.

The book

> does cover the connection between hormones and bone loss as well.

Although

> the book is targeted towards women 30 -50ish, the information seems

> pertinent to all women. (I think young women should read it before

they

> ever decide to go on the pill or not.)

>

> Kim

>

>

>

> ----------

> >From: " jdsb03 " <dbehan@r...>

> >To: CHARGE@y...

> >Subject: Osteoporosis

> >Date: Mon, Aug 5, 2002, 8:40 AM

> >

>

> > Hi,

> >

> > I have a question about osteoporosis. I wrote in some time ago

about

> > the use of estrogen. We decided to put on the estrogen

because

> > a bone age study showed that she has the begining of

osteoporosis. A

> > year later they decided to bring on her period because taking the

> > estrogen was building a linning. Well needles to say was

in no

> > way ready for this. We just can not make her understand that

this is

> > normal, and she will never understand. She is just not at that

point.

> >

> > I called the Dr. and told her that we had to find another way to

deal

> > with this. She had have a Dexa Scan done. Based on that

she

> > said that she is at high risk for fracture. She now wants to try

> > Evista. Possible side effect is hot flases not to metion it is a

> > adult drug.

> >

> > My question is is very small. She 65 pounds and is 4 " 1'

she is

> > 19. Her bones are not going to be of a 19 year old. They say

that she

> > is looing bone but I don't understand how they can compare this

test

> > she is the size of a 6 to 8 year old. This is the first Dexa Scan

that

> > she has had done so we have nothing to compare to. Maybe she has

> > always been this way. We just don't know.

> >

> > I just don't know what to do next. All I want is for her to be

> > healthy and happy. I keep throwing this drugs at her and then

try to

> > make her understand why she has side effect.

> >

> > The estrogen is no longer a option I can't put her through that

again.

> > She spent 4 days of throwing up. Lost 5 pounds which was not

water

> > she was 65 pounds and went down to 60. Her sugar levels went sky

> > high. And All she did was cry and beg me to make her period go

away.

> >

> > Has anyone else had their children tested for osteoporosis?

> >

> > Any input anyone has I would be very thankful for.

> >

> > Doris Behan (Mom to 19)

> >

> > Rochester NY

> >

> >

> > Membership of this email support groups does not constitute

membership in

> > the CHARGE Syndrome Foundation.

> > For information about the CHARGE Syndrome

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

> > please contact marion@c... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

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

> >

> >

> >

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Guest guest

um ill try to explain what my doctor was telling me jus the other

day. I have a " bone structure and density " of an eleven year old,

but " toerh parts of my body are nineteen " if you know what i mean. so

you can get osteoprosis becuase of that i have been on HRT since i

was about twelve, and jus wnet on to double the dose (my new doctors

is not happy with my previous doctor for not viving me enough) and i

stilldotn have a proper level of bone density

ugh im not making sense :)

Belinda 19 ye CHARGEr

> Hi Doris.

>

> I just finished reading " What your doctor may not tell you about

> premenopause " by Dr. Lee and Dr. Henley. This book does

a

> marvelous job about explaining how the female hormones work in our

bodies,

> not just in the menstrual cycle, but how they impact our overall

health,

> throughout our life span. He also does an excellent job of

explaining why

> estrogen and progesterone given in pill form, do not work the same

way.

> Basically the chemical structure is slightly different than that

which is

> made in our bodies. This structural difference, cause massive

confusion in

> our bodies, leading to all sorts of side effects, such as those you

are

> describing in . The book covers many other avenues of

regulating

> hormone balance, natural progesterone (a cream that has the same

chemical

> structure as progesterone made in the body), diet, supplements

etc...

> Perhaps there will be some clues for you there on what to do next.

The book

> does cover the connection between hormones and bone loss as well.

Although

> the book is targeted towards women 30 -50ish, the information seems

> pertinent to all women. (I think young women should read it before

they

> ever decide to go on the pill or not.)

>

> Kim

>

>

>

> ----------

> >From: " jdsb03 " <dbehan@r...>

> >To: CHARGE@y...

> >Subject: Osteoporosis

> >Date: Mon, Aug 5, 2002, 8:40 AM

> >

>

> > Hi,

> >

> > I have a question about osteoporosis. I wrote in some time ago

about

> > the use of estrogen. We decided to put on the estrogen

because

> > a bone age study showed that she has the begining of

osteoporosis. A

> > year later they decided to bring on her period because taking the

> > estrogen was building a linning. Well needles to say was

in no

> > way ready for this. We just can not make her understand that

this is

> > normal, and she will never understand. She is just not at that

point.

> >

> > I called the Dr. and told her that we had to find another way to

deal

> > with this. She had have a Dexa Scan done. Based on that

she

> > said that she is at high risk for fracture. She now wants to try

> > Evista. Possible side effect is hot flases not to metion it is a

> > adult drug.

> >

> > My question is is very small. She 65 pounds and is 4 " 1'

she is

> > 19. Her bones are not going to be of a 19 year old. They say

that she

> > is looing bone but I don't understand how they can compare this

test

> > she is the size of a 6 to 8 year old. This is the first Dexa Scan

that

> > she has had done so we have nothing to compare to. Maybe she has

> > always been this way. We just don't know.

> >

> > I just don't know what to do next. All I want is for her to be

> > healthy and happy. I keep throwing this drugs at her and then

try to

> > make her understand why she has side effect.

> >

> > The estrogen is no longer a option I can't put her through that

again.

> > She spent 4 days of throwing up. Lost 5 pounds which was not

water

> > she was 65 pounds and went down to 60. Her sugar levels went sky

> > high. And All she did was cry and beg me to make her period go

away.

> >

> > Has anyone else had their children tested for osteoporosis?

> >

> > Any input anyone has I would be very thankful for.

> >

> > Doris Behan (Mom to 19)

> >

> > Rochester NY

> >

> >

> > Membership of this email support groups does not constitute

membership in

> > the CHARGE Syndrome Foundation.

> > For information about the CHARGE Syndrome

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

> > please contact marion@c... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

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

> >

> >

> >

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