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HI I AM NEW TO THE LIST BUT JUST THOUGHT I WOULD ADD WHAT I KNOW. I WAS TOLD

MY SON TEST CAME BACK NORMAL BUT LOW AND I WAS TOLD SOMETIME WHEN THE CHILD

IS UPSET OR AGGREVIATED AND WE KNOW HOW THEY ARE DURING THE TEST THAT THEIR

LEVELS SOMETIME COME BACK OK BECAUSE WHEN UPSET THEIR PITUITUARY GLAND THROWS

OFF MY GH THEN NORMAL. ALSO I WAS TOLD SOMETIMES THE PITUITUARY GLAND MAKES

THE GH BUT DOES NOW SECREETE IT SO THE TEST COMES BACK OK BUT THAT IS WHY

THEY DONT GROW. I KNOW KNOW HOW TRUE THIS IS BUT THIS IS WHAT OUR NEW ENDRO

TOLD ME. WE ARE NOW WAITING TIL FEBUARY AND IF MY SON STILL HAS NOT GROWN

THEN WE WILL START TREATMENT. HIS NAME IS SHELBY HE IS 6 YRS AND 3 MONTHS

OLD STAND 3FT TALL AND WEIGHS A WHOPPING 30LBS AND THEY SAY LETS WAIT AND

SEE. MY SON DOES NOT EAT HAS ASHMA IS ALWAYS SICK HIS LAST BONE AGE SAID HE

HAS THE BONES OF A 2YRS 8 MONTH CHILD AND HIS INDEX FINGER APPERAED CURVED.

PLUS HE HAD WATER ON THE BRAIN AT BIRTH. I GET SO FRUSTRATED AT TIMES DONT'S

YOU ALL WANT TO STAND IF FRONT A GROUP OF DOCTORS AND YELL YES THERE IS

SOMETHING WRONG WITH MY CHILD YOU JUST DONT GET IT THEY ARE NOT GROWING.

PLUS HIS TEETH ARE HORRIBLE. SORRY JUST NEEDED TO VENT A LITTLE LIKE I SAID

I AM NEW HERE AND DO NOT KNOW WHAT ELSE TO DO. TO GET A DOCTOR TO LISTEN. I

HOPE WHAT I WAS TOLD BUT MY ENDRO HELPS A LITTLE TAKE CARE.

DEBI

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Hi, I'm the new member that didn't know anything about RSS a week

ago. I'm just a stay at home mom right now, but guess what? I

studied biology and pharmacology. Your question is right up my

alley.

As you know, the pituitary releases growth hormone in spurts,

especially during sleep. It then travels in the blood to the liver,

where a chemical reaction turns it into Growth Factor Type-1 (IGF-1).

This is the factor that acts at the cell level to assist the transfer

glucose from the blood into the cells as a fuel for growth, in a

similar manner as insulin does. IGF-1 acts upon chondrocytes to

stimulate bone growth and on muscle cells, both via a receptor

mediated response. As well, Growth Hormone itself acts a receptors on

fat cells to stimulate fat breakdown. There are studies in medical

journals that explain what is currently known about the growth hormone

receptors and IGF-1. Basically, a receptor is just a protein inserted

into the membrane of the cell that fits together with a particular

protein that my land on it. Every cell is covered in a variety of

receptors. There are several levels where there could be a " break " in

the chain of reactions

- defect in growth hormone receptors at liver either not binding well,

or in the process that results in production of IGF-1

- IGF-1 travels in the blood bound to a protein (insulin-like growth

factor-binding protein or IGFBP) so there could be something wrong at

this level

- at the target cells there may be too few receptors, they my not bind

as well as they should, they may be blocked by something else, or they

may not function normally

- even if the receptors are fine, there may be something happening or

not happening within the cells

The kinds of studies necessary to try and understand these pathways

are mostly done using animal tissue. It's not like a lab test that

they run through a machine, or look through a microscope. Unless the

doctor is actively involved in this kind of research, he or she

probably doesn't know how these pharmacological test are carried out.

Anyway, you are right - by having an excess of growth hormone, you

increase the GH's chance at competing for whatever receptor sites

are available, and/or increase the rates at which all the

subsequent reactions are happening...ie faster growth!!

Cheryl

> Hi all

>

> I was emailing Lynn earlier this evening and I got to thinking

about a theory I've had

> for awhile now. We have never discussed it here (since I've been a

member) and wonder if any

> of you have come across this discussion with your doctors.

>

> When our RSS kids are tested for GH and found to have sufficient

amounts and yet, we know

> they are not growing--what else could be at fault?

>

> I have always been suspicious that the receptors in the body that

absorb the hormone from

> the blood could be malfunctioning. They wouldn't be completely not

working or our guys

> wouldn't be growing AT ALL, but you wonder if the receptors are only

taking small (tiny!)

> quantities of what's in the blood stream and using it. Hence, when

we give our guys growth

> hormone, it's such a massive amount (added to the normal amount)

that the receptors can't

> help but take in and use more.

>

> I've asked the endo's about this before and I always get the same

answer--shrugged

> shoulders. I've even asked if they can test the capability of

absorption. Again, shrugs of

> the shoulders (they love to do that!!).

>

> I had one " fellow " tell me that the receptors are located at the

joints (knees, elbows etc)

> and are like little " pads " that absorb.

>

> So have any of you ventured into this area?? If not, maybe the next

one to hit Dr. H.'s

> office should ask her what she thinks. I'm sure she would be able to

explain either why it

> is a non issue or why it's not pursued in these cases.

>

> Any thoughts??

>

> Debby

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Hi Debby,

Another theory that seems to be popular among endocrinologists ( all 5 that I

have spoken with) is that RSS kids produce growth hormone at the wrong time. All

5 of these endo's told me the current thinking is that growth hormone is produce

at night while the kids are sleeping but that RSS kids produce it during the day

instead.

Just thought I'd throw another theory onto the pile.

Ken M

:)

Debra Baillargeon on 11/30/2000 09:25:07 PM

Please respond to RSS-Supportegroups

To: " MAGIC_listegroups " <MAGIC_listegroups>,

" RSS-Supportegroups " <RSS-Supportegroups>

cc:

Subject: Growth Question

Hi all

I was emailing Lynn earlier this evening and I got to thinking about a

theory I've had

for awhile now. We have never discussed it here (since I've been a member) and

wonder if any

of you have come across this discussion with your doctors.

When our RSS kids are tested for GH and found to have sufficient amounts and

yet, we know

they are not growing--what else could be at fault?

I have always been suspicious that the receptors in the body that absorb the

hormone from

the blood could be malfunctioning. They wouldn't be completely not working or

our guys

wouldn't be growing AT ALL, but you wonder if the receptors are only taking

small (tiny!)

quantities of what's in the blood stream and using it. Hence, when we give our

guys growth

hormone, it's such a massive amount (added to the normal amount) that the

receptors can't

help but take in and use more.

I've asked the endo's about this before and I always get the same

answer--shrugged

shoulders. I've even asked if they can test the capability of absorption. Again,

shrugs of

the shoulders (they love to do that!!).

I had one " fellow " tell me that the receptors are located at the joints (knees,

elbows etc)

and are like little " pads " that absorb.

So have any of you ventured into this area?? If not, maybe the next one to hit

Dr. H.'s

office should ask her what she thinks. I'm sure she would be able to explain

either why it

is a non issue or why it's not pursued in these cases.

Any thoughts??

Debby

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Interesting theory Ken

So when I start screaming again (which will be soon!!) that I want another sleep

study done

on Adam, I should have them throw in a GH test as well. Kill two birds with one

stone??

But thanks for the word....I'll mix that into my spinning brain for a few days

and may come

up with a catch all solution (I keep trying anyway!!!)

Thanks

Debby

kkm@... wrote:

> Hi Debby,

>

> Another theory that seems to be popular among endocrinologists ( all 5 that I

> have spoken with) is that RSS kids produce growth hormone at the wrong time.

All

> 5 of these endo's told me the current thinking is that growth hormone is

produce

> at night while the kids are sleeping but that RSS kids produce it during the

day

> instead.

>

> Just thought I'd throw another theory onto the pile.

>

> Ken M

> :)

>

> Debra Baillargeon on 11/30/2000 09:25:07 PM

>

> Please respond to RSS-Supportegroups

>

> To: " MAGIC_listegroups " <MAGIC_listegroups>,

> " RSS-Supportegroups " <RSS-Supportegroups>

> cc:

>

> Subject: Growth Question

>

> Hi all

>

> I was emailing Lynn earlier this evening and I got to thinking about a

> theory I've had

> for awhile now. We have never discussed it here (since I've been a member) and

> wonder if any

> of you have come across this discussion with your doctors.

>

> When our RSS kids are tested for GH and found to have sufficient amounts and

> yet, we know

> they are not growing--what else could be at fault?

>

> I have always been suspicious that the receptors in the body that absorb the

> hormone from

> the blood could be malfunctioning. They wouldn't be completely not working or

> our guys

> wouldn't be growing AT ALL, but you wonder if the receptors are only taking

> small (tiny!)

> quantities of what's in the blood stream and using it. Hence, when we give our

> guys growth

> hormone, it's such a massive amount (added to the normal amount) that the

> receptors can't

> help but take in and use more.

>

> I've asked the endo's about this before and I always get the same

> answer--shrugged

> shoulders. I've even asked if they can test the capability of absorption.

Again,

> shrugs of

> the shoulders (they love to do that!!).

>

> I had one " fellow " tell me that the receptors are located at the joints

(knees,

> elbows etc)

> and are like little " pads " that absorb.

>

> So have any of you ventured into this area?? If not, maybe the next one to hit

> Dr. H.'s

> office should ask her what she thinks. I'm sure she would be able to explain

> either why it

> is a non issue or why it's not pursued in these cases.

>

> Any thoughts??

>

> Debby

>

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Hi Debby,

Actually, Dr. H. once told me that she thought that indeed, RSS kids have some

sort of problem " processing " GH in their bodies. I don't recall the exact

technical terms. So, I think your theory is a good one!

But, one thing that confuses me is this: Let's assume that RSS kids have

trouble processing, or absorbing the GH that is naturally produced. Why, would

GHT help these children? If you pump additional GH into a child's body,

wouldn't the body still have the same problems in processing/absorbing it, no

matter what the source of the GH?

I've always wondered about that one.

Maybe GHT " jumpstarts " the system in the body to actually use the GH?

Maybe we moms will figure this thing out before the researchers do.

Katy

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Debby and Katy,

while I'm only just learning about RSS I do know that sometimes different

chemicals can 'compete' for receptor sites - I don't know whether there are

any specific competitors for Growth Hormone, but I know for any receptor

site there may be a number of different chemicals that fit the receptor

'lock' like a key, and may produce different results, or varying degrees of

response. Some of the possibilities with Growth Hormone would be

- the kids' growth hormone has a poor affinity for the GH receptor so is

less likely to bind to the receptor, OR produces a weaker than usual

response. In this case for GHT to work the recombitant growth hormone would

have to have a better affinity for the receptor (I have no idea how likely

this is)

- another chemical in their bodies has a higher affinity for the GH receptor

than Growth Hormone does, and therefore competes with it (without producing

a response) In this case GHT would work by flooding the receptors and

giving the competing chemical very little chance to attach to the receptor

site

of course all this is just theory and I don't know how well it can be

applied to growth hormone or even if there would be any way to test it. It

seems that since the kids do respond to GHT, there would not be any problems

with the number of GH receptors or their ability to respond, so in most

cases it should be a problem between the kids' naturally produced GH and the

receptor.

Does this help or just confuse things more?

Steph (mum of Darcy, 12 months - new member)

________________________________________________________________________________\

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Hey Steph

Thinking along those lines---which are good ones--what if instead of the

receptors being " no

good " the problem could be not enough receptors?????

Don't you love these mind benders--oh to be involved in research!!!!!!!!!

Debby

Hulsbosch wrote:

> Debby and Katy,

> while I'm only just learning about RSS I do know that sometimes different

> chemicals can 'compete' for receptor sites - I don't know whether there are

> any specific competitors for Growth Hormone, but I know for any receptor

> site there may be a number of different chemicals that fit the receptor

> 'lock' like a key, and may produce different results, or varying degrees of

> response. Some of the possibilities with Growth Hormone would be

> - the kids' growth hormone has a poor affinity for the GH receptor so is

> less likely to bind to the receptor, OR produces a weaker than usual

> response. In this case for GHT to work the recombitant growth hormone would

> have to have a better affinity for the receptor (I have no idea how likely

> this is)

> - another chemical in their bodies has a higher affinity for the GH receptor

> than Growth Hormone does, and therefore competes with it (without producing

> a response) In this case GHT would work by flooding the receptors and

> giving the competing chemical very little chance to attach to the receptor

> site

>

> of course all this is just theory and I don't know how well it can be

> applied to growth hormone or even if there would be any way to test it. It

> seems that since the kids do respond to GHT, there would not be any problems

> with the number of GH receptors or their ability to respond, so in most

> cases it should be a problem between the kids' naturally produced GH and the

> receptor.

>

> Does this help or just confuse things more?

>

> Steph (mum of Darcy, 12 months - new member)

>

>

________________________________________________________________________________\

_____

> Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

>

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excellent logic, and a possibility, although if the only problem is that

there weren't enough receptors the GHT wouldn't work. It is always possibly

that this is part of the problem though, so I wouldn't rule it out.

>

>Reply-To: RSS-Supportegroups

>To: RSS-Supportegroups

>Subject: Re: Growth Question

>Date: Mon, 04 Dec 2000 18:41:58 -0500

>

>Hey Steph

>

>Thinking along those lines---which are good ones--what if instead of the

>receptors being " no

>good " the problem could be not enough receptors?????

>

>Don't you love these mind benders--oh to be involved in research!!!!!!!!!

>

>Debby

>

> Hulsbosch wrote:

>

> > Debby and Katy,

> > while I'm only just learning about RSS I do know that sometimes

>different

> > chemicals can 'compete' for receptor sites - I don't know whether there

>are

> > any specific competitors for Growth Hormone, but I know for any receptor

> > site there may be a number of different chemicals that fit the receptor

> > 'lock' like a key, and may produce different results, or varying degrees

>of

> > response. Some of the possibilities with Growth Hormone would be

> > - the kids' growth hormone has a poor affinity for the GH receptor so is

> > less likely to bind to the receptor, OR produces a weaker than usual

> > response. In this case for GHT to work the recombitant growth hormone

>would

> > have to have a better affinity for the receptor (I have no idea how

>likely

> > this is)

> > - another chemical in their bodies has a higher affinity for the GH

>receptor

> > than Growth Hormone does, and therefore competes with it (without

>producing

> > a response) In this case GHT would work by flooding the receptors and

> > giving the competing chemical very little chance to attach to the

>receptor

> > site

> >

> > of course all this is just theory and I don't know how well it can be

> > applied to growth hormone or even if there would be any way to test it.

>It

> > seems that since the kids do respond to GHT, there would not be any

>problems

> > with the number of GH receptors or their ability to respond, so in most

> > cases it should be a problem between the kids' naturally produced GH and

>the

> > receptor.

> >

> > Does this help or just confuse things more?

> >

> > Steph (mum of Darcy, 12 months - new member)

> >

> >

>_______________________________________________________________________________\

______

> > Get more from the Web. FREE MSN Explorer download :

>http://explorer.msn.com

> >

>

________________________________________________________________________________\

_____

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

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