Re: - Eileen

[Guest guest]

Hi Pat...a lot of what you said mirrors Imogen in her early years...she also had

pnemonia and the rota virus! Sorry about the height thing...I tend to email

whilst doing several things at once and skim a bit! So you are hoping for 5.5 "

with treatment? Am I right now?

I had another look at 's pic and at closer inspection I can see he is

RSS...it's just he's such a chubby little fellow.....Imogen is much thinner in

the face...but at 6 she is well out of babyhood....and she eats but not masses

and masses.....so she is on the thin side.....but if you think about it...if our

kids are going to be on the short side it's best if they don't carry extra

weight. I'm 5.1 ....4 stone overweight...I know whereof I speak.....I look like

a little barrel!!

pcpets pcpets@...> wrote:

Eileen,

was born at 39 weeks gestation, weighing 3# 5oz and measuring 15 "

long. The OB didn't seem to have a clue that anything was wrong before he

was born, even though he did 5-6 ultrasounds. The most the OB ever mentioned

was that was going to be small, and that was said two days before he

was born. The Dr only scheduled a c-section because B's mom was young, and

he was still in a breach position.

seemed to gain fine at first, but then he tapered off, and totally

stopped gaining from 5-7 months of age. In fact, he lost 4oz! During this

time, his oral aversion got worse, and feeding him was next to impossible.

At 8.5 months of age, when we first met Dr H, he only weighed 8#.

Last winter was extremely hard on health-wise. He entered the

Cleveland Clinic 36 hours after our return from our 3-week stay in NY for

his surgery, with aspiration pnuemonitis. He was home for a little over a

month, and returned to the Clinic with rotavirus. After that, he was home

for 3 weeks, and returned once again to fight a 5 week bout with RSV,

missing both his first b-day, and Christmas at home. That's one of the

reason's we are so pleased to have him home this year.

The estimated height I wrote was without RSS, not GHT. Without GHT, he will

probably be well under 5', but for me, the other issues we are dealing with

are much worse than him being short.

suffers from very low muscle tone, and severe hypo-g. His immune

system, although MUCH better than last year, is still low, and he seems to

catch everything he comes in contact with. There are worries about him

developing insulin resistance. Dr H feels that GHT will help all of these

conditions, and might possibly control his hypo-g and prevent Type II

diabetes in the future, something that SGA kids are more prone to.

As far as the eating goes, I'm really not worried. With it seems to

be a control issue. He HAS to control what, and how much, goes into his

mouth, and being continually fed, he doesn't experience hunger, but

continual feeds are a must right now to control his hypo-g.(although he

never showed any signs of being hungry even as an infant. He could go 12

hours without a bottle, and still fight you when you tried to feed him) I

truly believe he'll eat when he's ready, and hopefully we're on that road

now. If not, then it will come in it's own time, some time in the future.

It doesn't seem to be unusual for us to know more than the Drs we have to

deal with when it comes to RSS. We've had many an argument with the Drs at

the Cleveland Clinic because of what we have learned, and they don't seem to

know.

I agree that it's sad about MJF, but you're right, he still looks great.

Pat

---------------------------------

[Guest guest]

Hi eileen its kim just to let you know my mum is staying over so if you've got

any ?s she may be able to answer you can email or im tonight

EILEEN REID eileenreid2003@...> wrote:Hi Pat...a lot of what you said

mirrors Imogen in her early years...she also had pnemonia and the rota virus!

Sorry about the height thing...I tend to email whilst doing several things at

once and skim a bit! So you are hoping for 5.5 " with treatment? Am I right now?

I had another look at 's pic and at closer inspection I can see he is

RSS...it's just he's such a chubby little fellow.....Imogen is much thinner in

the face...but at 6 she is well out of babyhood....and she eats but not masses

and masses.....so she is on the thin side.....but if you think about it...if our

kids are going to be on the short side it's best if they don't carry extra

weight. I'm 5.1 ....4 stone overweight...I know whereof I speak.....I look like

a little barrel!!

pcpets

wrote:

Eileen,

was born at 39 weeks gestation, weighing 3# 5oz and measuring 15 "

long. The OB didn't seem to have a clue that anything was wrong before he

was born, even though he did 5-6 ultrasounds. The most the OB ever mentioned

was that was going to be small, and that was said two days before he

was born. The Dr only scheduled a c-section because B's mom was young, and

he was still in a breach position.

seemed to gain fine at first, but then he tapered off, and totally

stopped gaining from 5-7 months of age. In fact, he lost 4oz! During this

time, his oral aversion got worse, and feeding him was next to impossible.

At 8.5 months of age, when we first met Dr H, he only weighed 8#.

Last winter was extremely hard on health-wise. He entered the

Cleveland Clinic 36 hours after our return from our 3-week stay in NY for

his surgery, with aspiration pnuemonitis. He was home for a little over a

month, and returned to the Clinic with rotavirus. After that, he was home

for 3 weeks, and returned once again to fight a 5 week bout with RSV,

missing both his first b-day, and Christmas at home. That's one of the

reason's we are so pleased to have him home this year.

The estimated height I wrote was without RSS, not GHT. Without GHT, he will

probably be well under 5', but for me, the other issues we are dealing with

are much worse than him being short.

suffers from very low muscle tone, and severe hypo-g. His immune

system, although MUCH better than last year, is still low, and he seems to

catch everything he comes in contact with. There are worries about him

developing insulin resistance. Dr H feels that GHT will help all of these

conditions, and might possibly control his hypo-g and prevent Type II

diabetes in the future, something that SGA kids are more prone to.

As far as the eating goes, I'm really not worried. With it seems to

be a control issue. He HAS to control what, and how much, goes into his

mouth, and being continually fed, he doesn't experience hunger, but

continual feeds are a must right now to control his hypo-g.(although he

never showed any signs of being hungry even as an infant. He could go 12

hours without a bottle, and still fight you when you tried to feed him) I

truly believe he'll eat when he's ready, and hopefully we're on that road

now. If not, then it will come in it's own time, some time in the future.

It doesn't seem to be unusual for us to know more than the Drs we have to

deal with when it comes to RSS. We've had many an argument with the Drs at

the Cleveland Clinic because of what we have learned, and they don't seem to

know.

I agree that it's sad about MJF, but you're right, he still looks great.

Pat

---------------------------------

[Guest guest]

thanks Kim.....I think most of my most pressing questions have been answered.

I'm really happy that most adults that i've spoken to that are your size(not

much over 4 feet) are quite happy with you they are.

That's very reassurring..

Eileen

kim taylor mightyatom_2@...> wrote:

Hi eileen its kim just to let you know my mum is staying over so if you've got

any ?s she may be able to answer you can email or im tonight

EILEEN REID eileenreid2003@...> wrote:Hi Pat...a lot of what you said

mirrors Imogen in her early years...she also had pnemonia and the rota virus!

Sorry about the height thing...I tend to email whilst doing several things at

once and skim a bit! So you are hoping for 5.5 " with treatment? Am I right now?

I had another look at 's pic and at closer inspection I can see he is

RSS...it's just he's such a chubby little fellow.....Imogen is much thinner in

the face...but at 6 she is well out of babyhood....and she eats but not masses

and masses.....so she is on the thin side.....but if you think about it...if our

kids are going to be on the short side it's best if they don't carry extra

weight. I'm 5.1 ....4 stone overweight...I know whereof I speak.....I look like

a little barrel!!

pcpets

wrote:

Eileen,

was born at 39 weeks gestation, weighing 3# 5oz and measuring 15 "

long. The OB didn't seem to have a clue that anything was wrong before he

was born, even though he did 5-6 ultrasounds. The most the OB ever mentioned

was that was going to be small, and that was said two days before he

was born. The Dr only scheduled a c-section because B's mom was young, and

he was still in a breach position.

seemed to gain fine at first, but then he tapered off, and totally

stopped gaining from 5-7 months of age. In fact, he lost 4oz! During this

time, his oral aversion got worse, and feeding him was next to impossible.

At 8.5 months of age, when we first met Dr H, he only weighed 8#.

Last winter was extremely hard on health-wise. He entered the

Cleveland Clinic 36 hours after our return from our 3-week stay in NY for

his surgery, with aspiration pnuemonitis. He was home for a little over a

month, and returned to the Clinic with rotavirus. After that, he was home

for 3 weeks, and returned once again to fight a 5 week bout with RSV,

missing both his first b-day, and Christmas at home. That's one of the

reason's we are so pleased to have him home this year.

The estimated height I wrote was without RSS, not GHT. Without GHT, he will

probably be well under 5', but for me, the other issues we are dealing with

are much worse than him being short.

suffers from very low muscle tone, and severe hypo-g. His immune

system, although MUCH better than last year, is still low, and he seems to

catch everything he comes in contact with. There are worries about him

developing insulin resistance. Dr H feels that GHT will help all of these

conditions, and might possibly control his hypo-g and prevent Type II

diabetes in the future, something that SGA kids are more prone to.

As far as the eating goes, I'm really not worried. With it seems to

be a control issue. He HAS to control what, and how much, goes into his

mouth, and being continually fed, he doesn't experience hunger, but

continual feeds are a must right now to control his hypo-g.(although he

never showed any signs of being hungry even as an infant. He could go 12

hours without a bottle, and still fight you when you tried to feed him) I

truly believe he'll eat when he's ready, and hopefully we're on that road

now. If not, then it will come in it's own time, some time in the future.

It doesn't seem to be unusual for us to know more than the Drs we have to

deal with when it comes to RSS. We've had many an argument with the Drs at

the Cleveland Clinic because of what we have learned, and they don't seem to

know.

I agree that it's sad about MJF, but you're right, he still looks great.

Pat

---------------------------------

[Guest guest]

Actually, Eileen, you are absolutely right. Too much weight is a real

problem for kids with RSS. It can bring on premature adrenarche, and insulin

resistance. B was consuming well over 120kcal/kg/day, but is now on a diet

of 80 kcal/kg/day. One of our problems is that he's still gaining weight too

quickly for his growth. Dr H prefers our kids to hang somewhere between the

10%-25% on the weight-for-height chart. Absolutely NOT at the 50% where B is

now.

My g-daughter, Aidan, is now over 3 and her face is losing that " baby " look

too. I think she's just cute as a button, but I am just a little bias! LOL

Aidan is kind of small for her age too. At 3.5 she weighs in at 27# and

measures about 3 feet tall.

Talk to you soon

Pat

[Guest guest]

Oh gawd Pat.....that's another worry!! The premature puberty thing.....that is

something that concerns me for that her being small....There's a young RSS woman

on this site who began at 7!!!!!! I'm kind of hoping that's unusual cos Imogen

will be 7 next birthday and is the same height as Aiden......can you imagine???

So I reckon I'm gonna be beating my endo's door down on jan 2nd.

I'll tell you what happened......after the early years of endless appontments

for this that and the other...nose tubes...tummy tubes...vomiting , anxious

weigh in sessions......gh treatment....allthat stuff.......we just couldn't

stand it anymore! And when she came off the tube...off the gh

treatment...started school with all the ordinary kids...and started living like

an ordinary kid herself....we just breathed a sigh of relief and let her get on

wityh just being 'little Imogen'.Ties with other RSS families were left to

drift,we didn't renew our membership with the UK growth group, we only have to

see our consultant once a year...and it was absolute bliss to have a break from

all that. Then I discovered this site...and I'm back in the maelstrom again!!!

But it's good......you can acuse us of burying our heads in the sand and we

have....and we needed it! But now it's good to talk to other folks like us

again....and think about having gh again...and also...best of all...talking to

adults with RSS.....I used to be scared...yes scared of what Imogen would turn

out like....I know now that whether she is 4ft or 5ft there's nothing to be

scared of.

That's the trouble with this site...I start waffling on and I've no idea where

it's gonna lead!!

Ahhh...poor ......wish we needed to put Immi on a diet....I can play the

Xylophone on her ribs bless her...

Eileen x

pcpets pcpets@...> wrote:

Actually, Eileen, you are absolutely right. Too much weight is a real

problem for kids with RSS. It can bring on premature adrenarche, and insulin

resistance. B was consuming well over 120kcal/kg/day, but is now on a diet

of 80 kcal/kg/day. One of our problems is that he's still gaining weight too

quickly for his growth. Dr H prefers our kids to hang somewhere between the

10%-25% on the weight-for-height chart. Absolutely NOT at the 50% where B is

now.

My g-daughter, Aidan, is now over 3 and her face is losing that " baby " look

too. I think she's just cute as a button, but I am just a little bias! LOL

Aidan is kind of small for her age too. At 3.5 she weighs in at 27# and

measures about 3 feet tall.

Talk to you soon

Pat

[Guest guest]

Hi Eileen,

I wouldn't accuse you of anything! I think all of us need some downtime when

it comes to these kids, and if we have to bury our heads in the sand for a

little while, then so be it, as long as it doesn't affect your child

negatively. When things come to a head, we have to pick ourselves up by our

boot straps, and jump back in.

I totally agree with you about not caring what 's " final " height is

as long as he is HEALTHY!!! He'll learn to deal with his height, just like

some kids have to deal with having glasses, or being fat, or any number of

other things. Hopefully, we can teach him to deal with everything with a

sense of humor, and an ability to laugh at himself.

I actually think we're all more comfortable with the " extra " weight that

is carrying, unfortunately it enables us to think of him as a

" normal " kid, and to forget that we need to keep an eye on some of his RSS

complications. When he was so tiny, and thin, we were more focused on ALL of

his health problems, and we were much more " on top " of everything. Did I

explain that right?? LOL

I cannot imagine Aidan weighing only 16#. It's just impossible for me.

Everyone thinks she's too thin, as it is. Personally, I just think she's

going to be small like her mom, but we are keeping an eye on her weight too.

It's really funny because we used to watch to make sure that Aidan wasn't

getting too fat, and that was gaining weight, and now it's the exact

opposite.

I hope your holidays are wonderful, and filled with joy.

Take care,

Pat

[Guest guest]

Hi Pat....I didn't aim the accusing thing at you!! I think I was self-accusing

hee hee! We all want the best for our kids and we;ll get there one way or the

other!! I'm going to post some pics of Imogen soon so you'll see what 3 feet and

16lbs looks like! Might take me a while tho'...I'm a complete technophobe.....!

Merry Christmas and a very Happy New Year to you and your other

grandkids....

Love from Eileen 42 5' 1 hundreds of pounds too much,Imogen 6 3feet 16 lbs RSS

Lucy 13, twins Owen and Natasha 9)

pcpets pcpets@...> wrote:

Hi Eileen,

I wouldn't accuse you of anything! I think all of us need some downtime when

it comes to these kids, and if we have to bury our heads in the sand for a

little while, then so be it, as long as it doesn't affect your child

negatively. When things come to a head, we have to pick ourselves up by our

boot straps, and jump back in.

I totally agree with you about not caring what 's " final " height is

as long as he is HEALTHY!!! He'll learn to deal with his height, just like

some kids have to deal with having glasses, or being fat, or any number of

other things. Hopefully, we can teach him to deal with everything with a

sense of humor, and an ability to laugh at himself.

I actually think we're all more comfortable with the " extra " weight that

is carrying, unfortunately it enables us to think of him as a

" normal " kid, and to forget that we need to keep an eye on some of his RSS

complications. When he was so tiny, and thin, we were more focused on ALL of

his health problems, and we were much more " on top " of everything. Did I

explain that right?? LOL

I cannot imagine Aidan weighing only 16#. It's just impossible for me.

Everyone thinks she's too thin, as it is. Personally, I just think she's

going to be small like her mom, but we are keeping an eye on her weight too.

It's really funny because we used to watch to make sure that Aidan wasn't

getting too fat, and that was gaining weight, and now it's the exact

opposite.

I hope your holidays are wonderful, and filled with joy.

Take care,

Pat