Coby's new stats from GH & questions

[Guest guest]

Coby went to see his endo yesterday. Although I am very irritated

with his measuring system, I wanted to share the great news on his

progress. Coby has been on GH for just over 2 months now.

He went from 19.13 lbs to 21.5 lbs and 30.5 ins to almost 32.5 ins.

That is almost 2 lbs and 2 inches in 2 months. We are ecstatic!!! I

am taking Coby in for a weight check at his local ped's office to

verify the weight. That is our regular machine that Coby uses every

time he goes and is always butt naked so I know I can trust it. It's

really nice to know that what we go through each night with the shots

and the constant arguing with grandparents not to give Coby water or

juice is really paying off. To actually see the difference in his

body structure is just amazing. He is getting much more solid.

However, with the height measurements I want to scream! I don't

understand how an endo's office can not do an accurate

measurement!!!! I mean that is THEIR specialty! I swear I would be

better off doing it myself. His first 2 appointments with the endo's

old nurse, they have recorded that Coby actually shrunk 2 inches. I

mean wouldn't that set off an alarm to someone when they went back

over his charts? I'm so frustrated. How do you find a good endo???

What is the rule of thumb for when they stop laying them down and

start standing them up to measure them?

Coby's numbers were low from his stim test. When I questioned his

endo if that meant he was GH resistant he stumbled around and

basically told me he didn't really know. He said that the test was

too inaccurate. Anyone have any advice on this?

le, mom to:

Shye, Brock, and Coby & Carlee

[Guest guest]

What is the rule of thumb for when they stop laying them down and

start standing them up to measure them?

I anm frustrated with that question too!!!! I can get my 22 month old to

stand still with his heels agaiinst the wall and look straight ahead, and I

have measured him at 30 " along with the same measurement our GI gets, but

our pediatricians still use the paper method and mark it, which it totally

inaccurate and always off by 1 " to 1 3/4 " inches over his actual height. I

would reccommend to your endo to do it both ways, and do them 3 times each

just to see if there is a change, and if your child can hold still standing

with his back straigth and heels against then he is ready. It is the most

accurate because you are not stretching the body to get the height.

[Guest guest]

congrates on coby! I hope to be in your shoes on day.

Coby's new stats from GH & questions

>

>

> Coby went to see his endo yesterday. Although I am very irritated

> with his measuring system, I wanted to share the great news on his

> progress. Coby has been on GH for just over 2 months now.

>

> He went from 19.13 lbs to 21.5 lbs and 30.5 ins to almost 32.5 ins.

> That is almost 2 lbs and 2 inches in 2 months. We are ecstatic!!! I

> am taking Coby in for a weight check at his local ped's office to

> verify the weight. That is our regular machine that Coby uses every

> time he goes and is always butt naked so I know I can trust it. It's

> really nice to know that what we go through each night with the shots

> and the constant arguing with grandparents not to give Coby water or

> juice is really paying off. To actually see the difference in his

> body structure is just amazing. He is getting much more solid.

>

> However, with the height measurements I want to scream! I don't

> understand how an endo's office can not do an accurate

> measurement!!!! I mean that is THEIR specialty! I swear I would be

> better off doing it myself. His first 2 appointments with the endo's

> old nurse, they have recorded that Coby actually shrunk 2 inches. I

> mean wouldn't that set off an alarm to someone when they went back

> over his charts? I'm so frustrated. How do you find a good endo???

>

> What is the rule of thumb for when they stop laying them down and

> start standing them up to measure them?

>

> Coby's numbers were low from his stim test. When I questioned his

> endo if that meant he was GH resistant he stumbled around and

> basically told me he didn't really know. He said that the test was

> too inaccurate. Anyone have any advice on this?

>

> le, mom to:

> Shye, Brock, and Coby & Carlee

>

>

>

>

>

>

>

>

[Guest guest]

le - growth hormone resistant is different from having a low

score on a stim test. A low score on a stim test is when a child

is " growth hormone deficient " -- which means that the child is NOT

producing enough growth hormone.

Other children, few, are growth hormone resistant. I believe Max

Zwain was diagnosed with this a while backk. If I recall correctly,

it is where growth hormone therapy has worked for a while and then

stops working, the body becomes " resistant " to using the growth

hormone.

Most RSS/SGA children are " growth hormone insufficient. " They may

test low normal on a stim test; they often test in the lower area of

normal on the IGF-1 blood test. It is very complicated, but in a

layman term, their bodies someone need MORE growth hormone to grow

than the normal child, and MORE calories to gain weight than the

normal child. Their body can not produce the GH levels that they

need, so they need to take it in externally.

Hope this helps.

Re the measuring -- I too am stunned that your endo is doing such a

poor job measuring. Once a child has been moved from being measured

laying down to standing up, ALL future measurements should be done

the same way so that you can track properly (parents, make sure that

your child's records are tracked properly for LENGTH (measured

laying down) versus HEIGHT (standing up). A child can lose 1-2

inches in height in this transition to standing up.

Once a child is measured standing up, the endocrinologist should

measure the child with a professional stadiometer. This is the

weighed machine that has a bar that comes and rests on the top of

the child's head (not the plastic kind at the pediatrician). It is

recommended that you hold and lock your child's knees against the

back of the wall; child stands up straight; cup your palms against

their jawline and gently pull their head up (we call it stretching

the neck). Make sure that if they have leg length asymmetry that a

proper compensation is put under the short leg (composition books or

reading books are often used).

And lastly, measure the child 2 or 3 times and take the average.

Bye for now!

>

> Coby went to see his endo yesterday. Although I am very irritated

> with his measuring system, I wanted to share the great news on his

> progress. Coby has been on GH for just over 2 months now.

>

> He went from 19.13 lbs to 21.5 lbs and 30.5 ins to almost 32.5

ins.

> That is almost 2 lbs and 2 inches in 2 months. We are

ecstatic!!! I

> am taking Coby in for a weight check at his local ped's office to

> verify the weight. That is our regular machine that Coby uses

every

> time he goes and is always butt naked so I know I can trust it.

It's

> really nice to know that what we go through each night with the

shots

> and the constant arguing with grandparents not to give Coby water

or

> juice is really paying off. To actually see the difference in his

> body structure is just amazing. He is getting much more solid.

>

> However, with the height measurements I want to scream! I don't

> understand how an endo's office can not do an accurate

> measurement!!!! I mean that is THEIR specialty! I swear I would

be

> better off doing it myself. His first 2 appointments with the

endo's

> old nurse, they have recorded that Coby actually shrunk 2 inches.

I

> mean wouldn't that set off an alarm to someone when they went back

> over his charts? I'm so frustrated. How do you find a good

endo???

>

> What is the rule of thumb for when they stop laying them down and

> start standing them up to measure them?

>

> Coby's numbers were low from his stim test. When I questioned his

> endo if that meant he was GH resistant he stumbled around and

> basically told me he didn't really know. He said that the test

was

> too inaccurate. Anyone have any advice on this?

>

> le, mom to:

> Shye, Brock, and Coby & Carlee

[Guest guest]

le - If I didn't make any sense on this email, write me

privately. I reread it just now, and am note sure even I understand

what I wrote. HA!

> >

> > Coby went to see his endo yesterday. Although I am very

irritated

> > with his measuring system, I wanted to share the great news on

his

> > progress. Coby has been on GH for just over 2 months now.

> >

> > He went from 19.13 lbs to 21.5 lbs and 30.5 ins to almost 32.5

> ins.

> > That is almost 2 lbs and 2 inches in 2 months. We are

> ecstatic!!! I

> > am taking Coby in for a weight check at his local ped's office

to

> > verify the weight. That is our regular machine that Coby uses

> every

> > time he goes and is always butt naked so I know I can trust it.

> It's

> > really nice to know that what we go through each night with the

> shots

> > and the constant arguing with grandparents not to give Coby

water

> or

> > juice is really paying off. To actually see the difference in

his

> > body structure is just amazing. He is getting much more solid.

> >

> > However, with the height measurements I want to scream! I don't

> > understand how an endo's office can not do an accurate

> > measurement!!!! I mean that is THEIR specialty! I swear I

would

> be

> > better off doing it myself. His first 2 appointments with the

> endo's

> > old nurse, they have recorded that Coby actually shrunk 2

inches.

> I

> > mean wouldn't that set off an alarm to someone when they went

back

> > over his charts? I'm so frustrated. How do you find a good

> endo???

> >

> > What is the rule of thumb for when they stop laying them down

and

> > start standing them up to measure them?

> >

> > Coby's numbers were low from his stim test. When I questioned

his

> > endo if that meant he was GH resistant he stumbled around and

> > basically told me he didn't really know. He said that the test

> was

> > too inaccurate. Anyone have any advice on this?

> >

> > le, mom to:

> > Shye, Brock, and Coby & Carlee