Re: Beginning growth hormone next week

[Guest guest]

look out for signs of well stuff u wouldnt expect to happen my periods

happend quich with oestrogen

>

> We are getting ready to start growth hormone on our soon to be 9 year old

> next week. We just got our starter packet yesterday with instructions. But

> I

> thought I'd send out a request to the real experts (you all) for any

> advice about

> how to administer it and what to look for. Thanks. He weighed in yesterday

> at

> 51 pounds and 471/2 inches. We'll see what happens. Thanks

>

> Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

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

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

>

[Guest guest]

look out for signs of well stuff u wouldnt expect to happen my periods

happend quich with oestrogen

>

> We are getting ready to start growth hormone on our soon to be 9 year old

> next week. We just got our starter packet yesterday with instructions. But

> I

> thought I'd send out a request to the real experts (you all) for any

> advice about

> how to administer it and what to look for. Thanks. He weighed in yesterday

> at

> 51 pounds and 471/2 inches. We'll see what happens. Thanks

>

> Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

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

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

>

[Guest guest]

i really should be in bed im sooooo tired

>

> look out for signs of well stuff u wouldnt expect to happen my periods

> happend quich with oestrogen

>

>

> >

> > We are getting ready to start growth hormone on our soon to be 9 year

> > old

> > next week. We just got our starter packet yesterday with instructions.

> > But I

> > thought I'd send out a request to the real experts (you all) for any

> > advice about

> > how to administer it and what to look for. Thanks. He weighed in

> > yesterday at

> > 51 pounds and 471/2 inches. We'll see what happens. Thanks

> >

> > Deedee, Mom to Bryce who turns 9 next month but looks like a first

> > grader

> >

> >

> > 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 - for CHARGE Syndrome

> > Canada information and membership, please visit

> > http://www.chargesyndrome.ca or email info@... .

> > 8th International

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

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

> >

[Guest guest]

i really should be in bed im sooooo tired

>

> look out for signs of well stuff u wouldnt expect to happen my periods

> happend quich with oestrogen

>

>

> >

> > We are getting ready to start growth hormone on our soon to be 9 year

> > old

> > next week. We just got our starter packet yesterday with instructions.

> > But I

> > thought I'd send out a request to the real experts (you all) for any

> > advice about

> > how to administer it and what to look for. Thanks. He weighed in

> > yesterday at

> > 51 pounds and 471/2 inches. We'll see what happens. Thanks

> >

> > Deedee, Mom to Bryce who turns 9 next month but looks like a first

> > grader

> >

> >

> > 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 - for CHARGE Syndrome

> > Canada information and membership, please visit

> > http://www.chargesyndrome.ca or email info@... .

> > 8th International

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

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

> >

[Guest guest]

Deedee-

When we were new to growth hormone, I found this one list-serve to be of

tremendous help - HGF-PEDS. If you are interested, go to

http://www.hgfound.org/ - you can browse around (there is alot of

information), and I highly recommend joining the Pediatric Internet Support

List. There are a number of veterans and experts that offer wonderful

insight, advice and explanation. There are many man parents with wonderful

stories, commiseration and suggestions about how to manage the daily

injections as well )

I am not sure what kind of information you are looking for. has been

on the injections for three years. He has not had any adverse reactions

from the medication and he has always been pleasant and compliant about the

shots. After the initial emotional adjustment (as parents - wrapping one's

mind around the idea of what we are doing and all that it might mean and all

that we might hope) - it's really a " piece of cake " . )

best always-

yuka

Beginning growth hormone next week

> We are getting ready to start growth hormone on our soon to be 9 year old

> next week. We just got our starter packet yesterday with instructions. But

I

> thought I'd send out a request to the real experts (you all) for any

advice about

> how to administer it and what to look for. Thanks. He weighed in yesterday

at

> 51 pounds and 471/2 inches. We'll see what happens. Thanks

>

> Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

>

>

> 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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

> 8th International

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

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Deedee-

When we were new to growth hormone, I found this one list-serve to be of

tremendous help - HGF-PEDS. If you are interested, go to

http://www.hgfound.org/ - you can browse around (there is alot of

information), and I highly recommend joining the Pediatric Internet Support

List. There are a number of veterans and experts that offer wonderful

insight, advice and explanation. There are many man parents with wonderful

stories, commiseration and suggestions about how to manage the daily

injections as well )

I am not sure what kind of information you are looking for. has been

on the injections for three years. He has not had any adverse reactions

from the medication and he has always been pleasant and compliant about the

shots. After the initial emotional adjustment (as parents - wrapping one's

mind around the idea of what we are doing and all that it might mean and all

that we might hope) - it's really a " piece of cake " . )

best always-

yuka

Beginning growth hormone next week

> We are getting ready to start growth hormone on our soon to be 9 year old

> next week. We just got our starter packet yesterday with instructions. But

I

> thought I'd send out a request to the real experts (you all) for any

advice about

> how to administer it and what to look for. Thanks. He weighed in yesterday

at

> 51 pounds and 471/2 inches. We'll see what happens. Thanks

>

> Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

>

>

> 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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

> 8th International

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

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Deedee-

When we were new to growth hormone, I found this one list-serve to be of

tremendous help - HGF-PEDS. If you are interested, go to

http://www.hgfound.org/ - you can browse around (there is alot of

information), and I highly recommend joining the Pediatric Internet Support

List. There are a number of veterans and experts that offer wonderful

insight, advice and explanation. There are many man parents with wonderful

stories, commiseration and suggestions about how to manage the daily

injections as well )

I am not sure what kind of information you are looking for. has been

on the injections for three years. He has not had any adverse reactions

from the medication and he has always been pleasant and compliant about the

shots. After the initial emotional adjustment (as parents - wrapping one's

mind around the idea of what we are doing and all that it might mean and all

that we might hope) - it's really a " piece of cake " . )

best always-

yuka

Beginning growth hormone next week

> We are getting ready to start growth hormone on our soon to be 9 year old

> next week. We just got our starter packet yesterday with instructions. But

I

> thought I'd send out a request to the real experts (you all) for any

advice about

> how to administer it and what to look for. Thanks. He weighed in yesterday

at

> 51 pounds and 471/2 inches. We'll see what happens. Thanks

>

> Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

>

>

> 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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

> 8th International

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

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Deedee,

Will be following your progress closely, particularly on benefits you gain

other than growth; bone density, strength, stamina, and so on. I have no

ideas for giving the shots, I cannot imagine with Dylan.

Kim

> We are getting ready to start growth hormone on our soon to be 9 year old

> next week. We just got our starter packet yesterday with instructions. But I

> thought I'd send out a request to the real experts (you all) for any advice

> about

> how to administer it and what to look for. Thanks. He weighed in yesterday at

> 51 pounds and 471/2 inches. We'll see what happens. Thanks

>

> Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

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

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

>

[Guest guest]

Deedee,

Will be following your progress closely, particularly on benefits you gain

other than growth; bone density, strength, stamina, and so on. I have no

ideas for giving the shots, I cannot imagine with Dylan.

Kim

> We are getting ready to start growth hormone on our soon to be 9 year old

> next week. We just got our starter packet yesterday with instructions. But I

> thought I'd send out a request to the real experts (you all) for any advice

> about

> how to administer it and what to look for. Thanks. He weighed in yesterday at

> 51 pounds and 471/2 inches. We'll see what happens. Thanks

>

> Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

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

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

>

[Guest guest]

Deedee-

I'm curious how they determined to use growth hormone for Bryce. Aubrie is

only 46 lbs at age 8.5 yrs. She's about 46-47 " . We began seeing

Endocrinology last year and the dr has been following her growth every 6

months. It was more frequent at first, but she decided that Aubrie is

growing well. She has actually grown and gained weight more rapidly this

past year than ever before.

Michele W

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

Beginning growth hormone next week

We are getting ready to start growth hormone on our soon to be 9 year old

next week. We just got our starter packet yesterday with instructions. But I

thought I'd send out a request to the real experts (you all) for any advice

about

how to administer it and what to look for. Thanks. He weighed in yesterday

at

51 pounds and 471/2 inches. We'll see what happens. Thanks

Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Deedee-

I'm curious how they determined to use growth hormone for Bryce. Aubrie is

only 46 lbs at age 8.5 yrs. She's about 46-47 " . We began seeing

Endocrinology last year and the dr has been following her growth every 6

months. It was more frequent at first, but she decided that Aubrie is

growing well. She has actually grown and gained weight more rapidly this

past year than ever before.

Michele W

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

Beginning growth hormone next week

We are getting ready to start growth hormone on our soon to be 9 year old

next week. We just got our starter packet yesterday with instructions. But I

thought I'd send out a request to the real experts (you all) for any advice

about

how to administer it and what to look for. Thanks. He weighed in yesterday

at

51 pounds and 471/2 inches. We'll see what happens. Thanks

Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Deedee-

I'm curious how they determined to use growth hormone for Bryce. Aubrie is

only 46 lbs at age 8.5 yrs. She's about 46-47 " . We began seeing

Endocrinology last year and the dr has been following her growth every 6

months. It was more frequent at first, but she decided that Aubrie is

growing well. She has actually grown and gained weight more rapidly this

past year than ever before.

Michele W

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

Beginning growth hormone next week

We are getting ready to start growth hormone on our soon to be 9 year old

next week. We just got our starter packet yesterday with instructions. But I

thought I'd send out a request to the real experts (you all) for any advice

about

how to administer it and what to look for. Thanks. He weighed in yesterday

at

51 pounds and 471/2 inches. We'll see what happens. Thanks

Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

,

It really wasn't a very complicated decision. The first time we went to

the endocronoligist (since he was a baby and got testosterone shots), he

strongly believed that Bryce would be a good candidate. He did some blood work

and

determined that he had a low dose of the growth hormone although he did have

some. He also x-rayed his hands. I can't remember exactly what they were looking

for in the hands. Then he ordered a cat scan of the pituatary gland to see if

it was abnormal in size or placement. The good news was that the pituatary

looked normal (nice to have somenthing in charge land look normal!) but that

meant that he questioned whether insurance would pay for the treatment without

more proof. He suggested we be put in-patient for a further test done with IV's

to prove to insurance that Bryce needed growth hormone. I asked if we could

just send off our current data first to insurance and 3 months later we did get

approval to go ahead.

Bryce has actually grown OK this year too and has recently put on a

whopping 3 pounds but he he still looks more like a 6-7 year old. I think it

meant

more to me since he is a boy and height is just one more thing to make him

stand out in a crowd. I'm not sure how I would feel if I had a girl where social

stigma of height is less of an issue.

My other big concern though is stamina. Bryce simply gives out quicker

than other kids. And parents on here have reported improvement in stamina with

the growth hormone. We will see.

Deedee

[Guest guest]

,

It really wasn't a very complicated decision. The first time we went to

the endocronoligist (since he was a baby and got testosterone shots), he

strongly believed that Bryce would be a good candidate. He did some blood work

and

determined that he had a low dose of the growth hormone although he did have

some. He also x-rayed his hands. I can't remember exactly what they were looking

for in the hands. Then he ordered a cat scan of the pituatary gland to see if

it was abnormal in size or placement. The good news was that the pituatary

looked normal (nice to have somenthing in charge land look normal!) but that

meant that he questioned whether insurance would pay for the treatment without

more proof. He suggested we be put in-patient for a further test done with IV's

to prove to insurance that Bryce needed growth hormone. I asked if we could

just send off our current data first to insurance and 3 months later we did get

approval to go ahead.

Bryce has actually grown OK this year too and has recently put on a

whopping 3 pounds but he he still looks more like a 6-7 year old. I think it

meant

more to me since he is a boy and height is just one more thing to make him

stand out in a crowd. I'm not sure how I would feel if I had a girl where social

stigma of height is less of an issue.

My other big concern though is stamina. Bryce simply gives out quicker

than other kids. And parents on here have reported improvement in stamina with

the growth hormone. We will see.

Deedee

[Guest guest]

,

It really wasn't a very complicated decision. The first time we went to

the endocronoligist (since he was a baby and got testosterone shots), he

strongly believed that Bryce would be a good candidate. He did some blood work

and

determined that he had a low dose of the growth hormone although he did have

some. He also x-rayed his hands. I can't remember exactly what they were looking

for in the hands. Then he ordered a cat scan of the pituatary gland to see if

it was abnormal in size or placement. The good news was that the pituatary

looked normal (nice to have somenthing in charge land look normal!) but that

meant that he questioned whether insurance would pay for the treatment without

more proof. He suggested we be put in-patient for a further test done with IV's

to prove to insurance that Bryce needed growth hormone. I asked if we could

just send off our current data first to insurance and 3 months later we did get

approval to go ahead.

Bryce has actually grown OK this year too and has recently put on a

whopping 3 pounds but he he still looks more like a 6-7 year old. I think it

meant

more to me since he is a boy and height is just one more thing to make him

stand out in a crowd. I'm not sure how I would feel if I had a girl where social

stigma of height is less of an issue.

My other big concern though is stamina. Bryce simply gives out quicker

than other kids. And parents on here have reported improvement in stamina with

the growth hormone. We will see.

Deedee

[Guest guest]

Yuka,

What kid of results have you seen and how quickly did you see them? I want to

resist the temptation to be constantly looking for results at first.

Deedee

[Guest guest]

Yuka,

What kid of results have you seen and how quickly did you see them? I want to

resist the temptation to be constantly looking for results at first.

Deedee

[Guest guest]

Yuka,

What kid of results have you seen and how quickly did you see them? I want to

resist the temptation to be constantly looking for results at first.

Deedee

[Guest guest]

Deedee-

Nate has been on growth hormone for almost a year and the difference is obvious.

It's hard not to expect huge changes. But the changes a more subtle. The

strength and stamina issues and still in question. The bone density and muscle

mass questions were our biggest concerns. I'm hoping to get a DEXA scan in the

next couple of weeks so we have a true marker to compare later.

As far as giving the shots-the nurse at the endo. clinic gave the whole family a

class on the dos and don'ts. There are eight possible places to give the shot

and we rotate every night with a different spot. You also want to give the shot

as late in the evening as possible-that's when the hormone would naturally work.

The entire process takes less than a minute. Sometimes we leave a little

bruise-but usually you'd never know he was getting the shots.

Good luck!

Barbara-mom,(CHARGE)11,Rosie16

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

From: ungethe@...

> We are getting ready to start growth hormone on our soon to be 9 year old

> next week. We just got our starter packet yesterday with instructions. But I

> thought I'd send out a request to the real experts (you all) for any advice

> about

> how to administer it and what to look for. Thanks. He weighed in yesterday at

> 51 pounds and 471/2 inches. We'll see what happens. Thanks

>

> Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

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

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

>

[Guest guest]

Deedee-

Nate has been on growth hormone for almost a year and the difference is obvious.

It's hard not to expect huge changes. But the changes a more subtle. The

strength and stamina issues and still in question. The bone density and muscle

mass questions were our biggest concerns. I'm hoping to get a DEXA scan in the

next couple of weeks so we have a true marker to compare later.

As far as giving the shots-the nurse at the endo. clinic gave the whole family a

class on the dos and don'ts. There are eight possible places to give the shot

and we rotate every night with a different spot. You also want to give the shot

as late in the evening as possible-that's when the hormone would naturally work.

The entire process takes less than a minute. Sometimes we leave a little

bruise-but usually you'd never know he was getting the shots.

Good luck!

Barbara-mom,(CHARGE)11,Rosie16

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

From: ungethe@...

> We are getting ready to start growth hormone on our soon to be 9 year old

> next week. We just got our starter packet yesterday with instructions. But I

> thought I'd send out a request to the real experts (you all) for any advice

> about

> how to administer it and what to look for. Thanks. He weighed in yesterday at

> 51 pounds and 471/2 inches. We'll see what happens. Thanks

>

> Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

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

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

>

[Guest guest]

Deedee-

Nate has been on growth hormone for almost a year and the difference is obvious.

It's hard not to expect huge changes. But the changes a more subtle. The

strength and stamina issues and still in question. The bone density and muscle

mass questions were our biggest concerns. I'm hoping to get a DEXA scan in the

next couple of weeks so we have a true marker to compare later.

As far as giving the shots-the nurse at the endo. clinic gave the whole family a

class on the dos and don'ts. There are eight possible places to give the shot

and we rotate every night with a different spot. You also want to give the shot

as late in the evening as possible-that's when the hormone would naturally work.

The entire process takes less than a minute. Sometimes we leave a little

bruise-but usually you'd never know he was getting the shots.

Good luck!

Barbara-mom,(CHARGE)11,Rosie16

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

From: ungethe@...

> We are getting ready to start growth hormone on our soon to be 9 year old

> next week. We just got our starter packet yesterday with instructions. But I

> thought I'd send out a request to the real experts (you all) for any advice

> about

> how to administer it and what to look for. Thanks. He weighed in yesterday at

> 51 pounds and 471/2 inches. We'll see what happens. Thanks

>

> Deedee, Mom to Bryce who turns 9 next month but looks like a first grader

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

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

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

>

[Guest guest]

Deedee-

I completely understand ) Before started therapy, I was a

subscriber on the HGF-PEDS list, and some people were talking about several

inches a year and shoes changing every two months....

When started the therapy at the age of 13 , he was two inches shorter

than his brother who was ten at the time (and he is also short - was

shorter than most eight year olds at the time). The year and a half prior

to starting the therapy, he had grown a total of 2 centimeters (less than

one inch). He wore a size 11 shoe (kids 11, as in less than 13)

It has been three years since he began. His growth velocity has remained

constant on the hormone therapy, though his dose of medication has gone up

as he has grown (he started on 1.2 mg 5 days a week and is now at 2.4mg

seven days a week).

He now wears a men's 9 1/2 shoe (so many small bones in the hands and feet -

so the growth really shows there. I call them " Labrador puppy " hands and

feet, because they are so large compared to the rest of him). He is now

slightly taller than his brother who is three years younger (which means he

is growing more than his medically unremarkable brother during the ages of

10-13). At 16, he is in the same stage of puberty (or perhaps a little

further along) than that same brother. (The younger brother wears a size 6

men's shoe though). It does also mean that he hasn't yet gotten that year

of accelerated growth that many children get in their early teens - but his

bone age is still 13 1/2, so perhaps it is in his future. He has began

testosterone injections 18 months ago to try and bring on puberty and it's

growth without moving it so quickly that it would close his growth period.

He has grown a total of nine inches in three years - or three inches each

year - which is more than triple the growth he had without the therapy.

's bone age has remained a consistent three years behind his

chronological age throughout this process. Everyone who sees him (the

podiatrist for his feet looking at x-rays of his feet and the orthopedist

for his spine seeing his hips on xray) always remark - 'for sixteen he still

has a lot of growing to do! "

Hope this helps-

best-

Yuka

Re: Beginning growth hormone next week

> Yuka,

> What kind of results have you seen and how quickly did you see them? I

want to

> resist the temptation to be constantly looking for results at first.

>

> Deedee

[Guest guest]

Deedee-

I completely understand ) Before started therapy, I was a

subscriber on the HGF-PEDS list, and some people were talking about several

inches a year and shoes changing every two months....

When started the therapy at the age of 13 , he was two inches shorter

than his brother who was ten at the time (and he is also short - was

shorter than most eight year olds at the time). The year and a half prior

to starting the therapy, he had grown a total of 2 centimeters (less than

one inch). He wore a size 11 shoe (kids 11, as in less than 13)

It has been three years since he began. His growth velocity has remained

constant on the hormone therapy, though his dose of medication has gone up

as he has grown (he started on 1.2 mg 5 days a week and is now at 2.4mg

seven days a week).

He now wears a men's 9 1/2 shoe (so many small bones in the hands and feet -

so the growth really shows there. I call them " Labrador puppy " hands and

feet, because they are so large compared to the rest of him). He is now

slightly taller than his brother who is three years younger (which means he

is growing more than his medically unremarkable brother during the ages of

10-13). At 16, he is in the same stage of puberty (or perhaps a little

further along) than that same brother. (The younger brother wears a size 6

men's shoe though). It does also mean that he hasn't yet gotten that year

of accelerated growth that many children get in their early teens - but his

bone age is still 13 1/2, so perhaps it is in his future. He has began

testosterone injections 18 months ago to try and bring on puberty and it's

growth without moving it so quickly that it would close his growth period.

He has grown a total of nine inches in three years - or three inches each

year - which is more than triple the growth he had without the therapy.

's bone age has remained a consistent three years behind his

chronological age throughout this process. Everyone who sees him (the

podiatrist for his feet looking at x-rays of his feet and the orthopedist

for his spine seeing his hips on xray) always remark - 'for sixteen he still

has a lot of growing to do! "

Hope this helps-

best-

Yuka

Re: Beginning growth hormone next week

> Yuka,

> What kind of results have you seen and how quickly did you see them? I

want to

> resist the temptation to be constantly looking for results at first.

>

> Deedee

[Guest guest]

Deedee-

I completely understand ) Before started therapy, I was a

subscriber on the HGF-PEDS list, and some people were talking about several

inches a year and shoes changing every two months....

When started the therapy at the age of 13 , he was two inches shorter

than his brother who was ten at the time (and he is also short - was

shorter than most eight year olds at the time). The year and a half prior

to starting the therapy, he had grown a total of 2 centimeters (less than

one inch). He wore a size 11 shoe (kids 11, as in less than 13)

It has been three years since he began. His growth velocity has remained

constant on the hormone therapy, though his dose of medication has gone up

as he has grown (he started on 1.2 mg 5 days a week and is now at 2.4mg

seven days a week).

He now wears a men's 9 1/2 shoe (so many small bones in the hands and feet -

so the growth really shows there. I call them " Labrador puppy " hands and

feet, because they are so large compared to the rest of him). He is now

slightly taller than his brother who is three years younger (which means he

is growing more than his medically unremarkable brother during the ages of

10-13). At 16, he is in the same stage of puberty (or perhaps a little

further along) than that same brother. (The younger brother wears a size 6

men's shoe though). It does also mean that he hasn't yet gotten that year

of accelerated growth that many children get in their early teens - but his

bone age is still 13 1/2, so perhaps it is in his future. He has began

testosterone injections 18 months ago to try and bring on puberty and it's

growth without moving it so quickly that it would close his growth period.

He has grown a total of nine inches in three years - or three inches each

year - which is more than triple the growth he had without the therapy.

's bone age has remained a consistent three years behind his

chronological age throughout this process. Everyone who sees him (the

podiatrist for his feet looking at x-rays of his feet and the orthopedist

for his spine seeing his hips on xray) always remark - 'for sixteen he still

has a lot of growing to do! "

Hope this helps-

best-

Yuka

Re: Beginning growth hormone next week

> Yuka,

> What kind of results have you seen and how quickly did you see them? I

want to

> resist the temptation to be constantly looking for results at first.

>

> Deedee

[Guest guest]

think the hands measure bone age

>

> Deedee-

>

> I completely understand ) Before started therapy, I was a

> subscriber on the HGF-PEDS list, and some people were talking about

> several

> inches a year and shoes changing every two months....

>

> When started the therapy at the age of 13 , he was two inches

> shorter

> than his brother who was ten at the time (and he is also short - was

> shorter than most eight year olds at the time). The year and a

> half prior

> to starting the therapy, he had grown a total of 2 centimeters (less than

> one inch). He wore a size 11 shoe (kids 11, as in less than 13)

>

> It has been three years since he began. His growth velocity has remained

> constant on the hormone therapy, though his dose of medication has gone

> up

> as he has grown (he started on 1.2 mg 5 days a week and is now at 2.4mg

> seven days a week).

>

> He now wears a men's 9 1/2 shoe (so many small bones in the hands and feet

> -

> so the growth really shows there. I call them " Labrador puppy " hands and

> feet, because they are so large compared to the rest of him). He is now

> slightly taller than his brother who is three years younger (which means

> he

> is growing more than his medically unremarkable brother during the ages of

> 10-13). At 16, he is in the same stage of puberty (or perhaps a little

> further along) than that same brother. (The younger brother wears a size

> 6

> men's shoe though). It does also mean that he hasn't yet gotten that year

> of accelerated growth that many children get in their early teens - but

> his

> bone age is still 13 1/2, so perhaps it is in his future. He has began

> testosterone injections 18 months ago to try and bring on puberty and it's

> growth without moving it so quickly that it would close his growth period.

> He has grown a total of nine inches in three years - or three inches each

> year - which is more than triple the growth he had without the therapy.

>

> 's bone age has remained a consistent three years behind his

> chronological age throughout this process. Everyone who sees him (the

> podiatrist for his feet looking at x-rays of his feet and the orthopedist

> for his spine seeing his hips on xray) always remark - 'for sixteen he

> still

> has a lot of growing to do! "

>

> Hope this helps-

>

> best-

>

> Yuka

>

> Re: Beginning growth hormone next week

>

>

> > Yuka,

> > What kind of results have you seen and how quickly did you see them? I

> want to

> > resist the temptation to be constantly looking for results at first.

> >

> > Deedee

>

>

>

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> 8th International

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

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>