To Eileen: re height as an inconvenience

[Guest guest]

I have to agree, since i'm only 4'8, every pound i gain shows. That is one

thing I hate about being so short. The weight has nowhere to go, but to my

butt, gut and hips. I never had a problem with weight until the last several

years. I have joined a gym so hopefully I can control it before it gets way out

of hand.

Teri

[Guest guest]

Eileen - I am just now trying to go back and read all the postings

from the last couple weeks. But I was a bit worried about one line

in your posting below. You wrote " short stature is an inconvenience

and nothing more. "

I strongly encourage to you talk to the RSS adults who attended the

convention. Maybe you can come to the convention this summer?

THere are scholarships. Stanhope is coming again from

England to speak.

The reason I write this is that there are some health issues related

to being too short. For one, an adult woman less than a certain

height will not be able to carry a child to term. Also, adults of

shorter stature (and it gets harder the shorter you get) have a much

higher risk of being overweight as adults. There are multiple

reasons for this -- as one RSS 4'1 " woman said to me -- adult

portions are not prorated based on height!!! And 3500 extra

calories is equal to one pound of additional poundage regardless of

height -- the problem is that 1 pound on a 4'6 " 85 pound woman is a

LOT more weight than 1 pound on a 5'3 " 110 pound woman! "

Furthermore, because children born SGA are at serious increased risk

for developing " syndrome x " (insulin resistance, cardiovascular

issues, Type 2 diabetes) and these risks are multiplied the more SGA

the child was (your daughter clearly was very underweight), carrying

extra weight can only exacerbate these risks. None of this seems to

me to be an inconvenience.

I absolutely agree with you that every parent has to make the right

decision for themselves. I just want to make sure you do know all

the stuff that has been coming out these last few years. A lot of

new information comes out at the MAGIC convention every summer,

primarily because the two major doctors with RSS patients go there,

and haven't had time to publish lately! So they tell us the stuff

at the convention, and then we beg them to get it published!!!

There is some thought out there in the medical community currently

questioning the " syndrome x " link. Some still believe that it is

genetically inherent in these kids. But some others are wondering

if it is possible that since so many of the SGA children grow up to

be overweight adults (isn't that ironic!!!) (the thought is that

their weight is probably NORMAL for what their height should have

been).... that if the child used GH and got their height to a

more " normal " level based on their parents height, that their weight

would also be more in proportion, lessening their risk for the

syndrome x issues.

So much is currently unknown, though, and you are right, we all are

basically winging it. Just wanted to let you know this information.

Salem

> Ha, ha, Eileen, no there are definitely a few more than seven,

even

> in this tiny country of Scotland!

>

> Am I right in saying Imogen is 5? In what way is she behind at

> school? I just wondered because it seems to me that most of how

> children are asked to show what they have learned in the early

> primaries is via writing or colouring in, and I know that Hamish

was

> and still can be very slow at getting through the work when it is

> presented in this way, because of the emphasis on using his motor

> skills. He is still the messiest colourer-in!

>

> I think you are right to go with your gut feeling about gh because

> there are no guarantees either way - some endos believe it will

give

> extra final height, and others don't, and I am sure there are

studies

> and reports supporting both views. It certainly was no easy

decision

> for us to make, and I still worry that it is the right one, but we

> can only do what we think in our hearts is best for them, and like

> you, I feel we should let him be what he is since he is healthy

and

> happy. I just try to make sure he eats well and enough, drinks

lots

> of water, and gets lots of exercise, just what you would want for

any

> child, but a bit more urgent! Luckily, Hamish is now quite a good

> eater, and will try anything as long as it's a green vegetable!!

He

> even happily tried sprouts at Christmas and liked them " but

they're

> not my favourite. " How weird!

>

> How is Imogen's appetite? I think I remember you saying not

good.

> Have you ever tried using Periactin? It really has remarkable

> results and has got us through some periods where his appetite had

> gone way down again. The moods he suffered, however, were

horrendous

> and it was heart breaking to see him so frustrated and angry, so

we

> really only used it as a kick start to his eating well, and that

> seemd to work. His appetite went way up, and he slept a lot, both

of

> which are of course good things for growth. After a few days, his

> tum had expanded and he would be eating better even without the

> Periactin.

>

> Best wishes

> Barbara

>

>

>

>

>

>

>

> ---------------------------------

>

[Guest guest]

-Thankyou for your email.Studies have shown that although

gh can show encouraging growth in childhood it has little effect on

adult height in RSS children.GH can possibly bring about an

increased risk of diabetes in adult life as well as an increased

risk of heart problems and high blood pressure.I have spoken to RSS

adults on this site (some who are overweight as I am myself!) and

they are very positive about themselves . I have been to conventions

and I have been through all the angst associated with being the

parent of an RSS child.I have come out of that and tho ' I have the

odd worry there is nothing to feel desperate about! Our children do

not have a life threatening condition thank goodness...and I'm well

aware of possible pregnancy problems. But there are so many much

worse things our children could have!I am positive about my

child ...I try not to dwell on the negatives. . Eileen-- In RSS-

Support , " magicrss " wrote:

> Eileen - I am just now trying to go back and read all the postings

> from the last couple weeks. But I was a bit worried about one

line

> in your posting below. You wrote " short stature is an

inconvenience

> and nothing more. "

>

> I strongly encourage to you talk to the RSS adults who attended

the

> convention. Maybe you can come to the convention this summer?

> THere are scholarships. Stanhope is coming again from

> England to speak.

>

> The reason I write this is that there are some health issues

related

> to being too short. For one, an adult woman less than a certain

> height will not be able to carry a child to term. Also, adults of

> shorter stature (and it gets harder the shorter you get) have a

much

> higher risk of being overweight as adults. There are multiple

> reasons for this -- as one RSS 4'1 " woman said to me -- adult

> portions are not prorated based on height!!! And 3500 extra

> calories is equal to one pound of additional poundage regardless

of

> height -- the problem is that 1 pound on a 4'6 " 85 pound woman is

a

> LOT more weight than 1 pound on a 5'3 " 110 pound woman! "

>

> Furthermore, because children born SGA are at serious increased

risk

> for developing " syndrome x " (insulin resistance, cardiovascular

> issues, Type 2 diabetes) and these risks are multiplied the more

SGA

> the child was (your daughter clearly was very underweight),

carrying

> extra weight can only exacerbate these risks. None of this seems

to

> me to be an inconvenience.

>

> I absolutely agree with you that every parent has to make the

right

> decision for themselves. I just want to make sure you do know all

> the stuff that has been coming out these last few years. A lot of

> new information comes out at the MAGIC convention every summer,

> primarily because the two major doctors with RSS patients go

there,

> and haven't had time to publish lately! So they tell us the stuff

> at the convention, and then we beg them to get it published!!!

>

> There is some thought out there in the medical community currently

> questioning the " syndrome x " link. Some still believe that it is

> genetically inherent in these kids. But some others are wondering

> if it is possible that since so many of the SGA children grow up

to

> be overweight adults (isn't that ironic!!!) (the thought is that

> their weight is probably NORMAL for what their height should have

> been).... that if the child used GH and got their height to a

> more " normal " level based on their parents height, that their

weight

> would also be more in proportion, lessening their risk for the

> syndrome x issues.

>

> So much is currently unknown, though, and you are right, we all

are

> basically winging it. Just wanted to let you know this

information.

>

> Salem

>

>

> > Ha, ha, Eileen, no there are definitely a few more than seven,

> even

> > in this tiny country of Scotland!

> >

> > Am I right in saying Imogen is 5? In what way is she behind at

> > school? I just wondered because it seems to me that most of how

> > children are asked to show what they have learned in the early

> > primaries is via writing or colouring in, and I know that Hamish

> was

> > and still can be very slow at getting through the work when it

is

> > presented in this way, because of the emphasis on using his

motor

> > skills. He is still the messiest colourer-in!

> >

> > I think you are right to go with your gut feeling about gh

because

> > there are no guarantees either way - some endos believe it will

> give

> > extra final height, and others don't, and I am sure there are

> studies

> > and reports supporting both views. It certainly was no easy

> decision

> > for us to make, and I still worry that it is the right one, but

we

> > can only do what we think in our hearts is best for them, and

like

> > you, I feel we should let him be what he is since he is healthy

> and

> > happy. I just try to make sure he eats well and enough, drinks

> lots

> > of water, and gets lots of exercise, just what you would want

for

> any

> > child, but a bit more urgent! Luckily, Hamish is now quite a

good

> > eater, and will try anything as long as it's a green

vegetable!!

> He

> > even happily tried sprouts at Christmas and liked them " but

> they're

> > not my favourite. " How weird!

> >

> > How is Imogen's appetite? I think I remember you saying not

> good.

> > Have you ever tried using Periactin? It really has remarkable

> > results and has got us through some periods where his appetite

had

> > gone way down again. The moods he suffered, however, were

> horrendous

> > and it was heart breaking to see him so frustrated and angry, so

> we

> > really only used it as a kick start to his eating well, and that

> > seemd to work. His appetite went way up, and he slept a lot,

both

> of

> > which are of course good things for growth. After a few days,

his

> > tum had expanded and he would be eating better even without the

> > Periactin.

> >

> > Best wishes

> > Barbara

> >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> >