Re: Sunday NYTimes article: Bound to cause a stir

[Guest guest]

Thank you Katy - very much appreciated. This just pushes and stirs

my bonnet even more to write an article to these newspapers......

- H

>

> Hi All,

> This is the biggest coverage I've seen yet by NYTimes on GHT use.

A

> hugely provactive article. And, important, whether you choose to

or

> not use gHT for your children.

> http://www.nytimes.com/2005/10/16/magazine/16growth.html?8hpib

>

> While the article doesn't mention RSS specifically, it implies

that if

> GH levels are normal, then parents who give GHT to their children

may

> only be making that decision for " cosmetic " reasons. And, the

author

> clearly points out the financial advantage to pharmaceuticals on

the

> use of GHT to " ideopathic short statured " children (test normal

for

> GHT).

>

> HOWEVER, here are three facts that the author of this article, and

its

> readers should consider:

>

> 1. While RSS children are often referred to being in the ISS

> (Idiopathic Short Stature) category...which is good news for us

> insofar as allowing our children to legally be entitled to get

GHT, as

> per FDA guidelines....I believe this label should not be

interpreted

> to mean " short, but medically normal " .

> 2. I believe RSS children who test " normal " for GH levels don't

> actually have NORMAL GH functioning. Their levels may be " normal "

but

> are still insufficient for growth. In RSS children, the pathway

of

> brain-->Pituitary-->Liver--> Growth FActors is aided by the

> GHT " boost " . Dr. Stanhope, from London, first introduced

this

> concept of " not deficient, but insufficient " at our 03 Convention.

> 3. RSS/SGA children can be at risk of type 2 diabetes, due to the

> fact that the body ratio of fat to muscle is higher, since growth

is

> diminished. As we learned this past summer, and in that

tantalizing

> slide of a cross section of a child's thigh, GHT can actually

improve

> muscle to fat ratio, and thereby lesson chance of getting type 2

> diabetes. It's not just about height.

>

> But, the article brings up the more important issue of the

> psychological advantages of height.....fascinating reading.

>

> Katy

>

[Guest guest]

Katy,

I did not find the NY Times article to be quite as controversial for

our children as I expected it to be. While the author does talk

about the question of using gh for children of idiopathic short

stature, he also justifies using gh for those for whom it is

medically necessary. And for our kids it is medically necessary for

the reasons that you gave: stabilizing blood sugar, increasing

muscle mass to help stabilize blood sugar, and some other medical

reasons including those that involve gut dysmotility, lack of

appetite and some other points that are not coming to my mind at the

moment. (It's being clouded by Vicodin again....)

I believe that RSS/SGA falls into that category of being a medical

issue, not just ISS. The author seems to feel that there is a

clear line between the two, but we all know that it there is not.

It is not as simple as he suggests, implies and states. These

things never are.

But I found that article to be quite fascinating. You know, I

always wonder how complete the research is when a controversial

topic like this is brought up. Does the author/reporter do a

complete search of medical research or does he tend to choose those

studies that support his point of view? He clearly states that he

was short as a 14 year old and suffered little consequences. Did

that taint his research? Was he trying to support his own

experiences and feelings? The topic is much more complicated than

what was portrayed and the lines are not nearly as neat and clean

when making the decision to use or not use gh.

Jodi Z

[Guest guest]

Hi Jodi--

Excellent points! Wish I could have tacked on your posting to my

posting.

From an insurance perspective, though, some of us have actually

argued with insurance companies that gHT should be covered because

our children all into that category of " normal gH levels " , but not

growing otherwise. But, not ISS, in the way that this author portays

it. It is a very narrow definition, and you're right, the author

clearly does NOT know about RSS.

The biggest misconception I think people like this author have is

that RSS parents walk into a pediatrician's office one day and

say, " Hey Doc, my kids seems awfully short. Can I give him GH to

give him inches? " . My experience here, at Convention and via my

emails is that this conversation is preceded by months or years of

feeding issues, illnesses, problems with sports, hypoglycemia,

reflux, milestones not being met, etc..

It is not a decision any of us take lightly.

(Sorry so long-winded...Ken, now that Red Sox are out of it I have

too much time on my hands! :-)

Katy

>

> Katy,

>

> I did not find the NY Times article to be quite as controversial

for

> our children as I expected it to be. While the author does talk

> about the question of using gh for children of idiopathic short

> stature, he also justifies using gh for those for whom it is

> medically necessary. And for our kids it is medically necessary

for

> the reasons that you gave: stabilizing blood sugar, increasing

> muscle mass to help stabilize blood sugar, and some other medical

> reasons including those that involve gut dysmotility, lack of

> appetite and some other points that are not coming to my mind at

the

> moment. (It's being clouded by Vicodin again....)

>

> I believe that RSS/SGA falls into that category of being a medical

> issue, not just ISS. The author seems to feel that there is a

> clear line between the two, but we all know that it there is not.

> It is not as simple as he suggests, implies and states. These

> things never are.

>

> But I found that article to be quite fascinating. You know, I

> always wonder how complete the research is when a controversial

> topic like this is brought up. Does the author/reporter do a

> complete search of medical research or does he tend to choose those

> studies that support his point of view? He clearly states that he

> was short as a 14 year old and suffered little consequences. Did

> that taint his research? Was he trying to support his own

> experiences and feelings? The topic is much more complicated than

> what was portrayed and the lines are not nearly as neat and clean

> when making the decision to use or not use gh.

>

> Jodi Z

>

[Guest guest]

Katy,

We've fought the gh battle with insurance several times, too. Thank

goodness for Dr. H. She just won't take no for an answer if that is

what she wants for her patient. I'd hate to be on the receiving end

of her ire. Actually, lately I see that she is not as argumentative.

At least not when we saw her last week and told her of our experiences

with Max's GI doctors. She just called them up, told them

her " thoughts, " (read: what SHE wants to do), and they just fell into

step. Her tactics were so well-orchestrated! I loved it.

Jodi Z