Agree to disagree

[Guest guest]

Eileen,

I am afraid that you and I are going to have to agree to disagree.

You are relatively new to this listserve, so you do not know the

background that and I have, but that is okay. What is

important is that the purpose for this listserve is to keep people

informed, to support each other and to learn from each other.

You have said a few things that go against my way of thinking, but

that is okay, too. Just remember that there are new people all the

time who are reading these messages and they don't know any of us

from Adam.

I am glad that Imogen is enjoying being a little girl, has no

medical interventions and she is happy. My son, on the other hand,

has had MANY medical interventions, including gh, and is a great and

happy kid/teen, too. Unfortunately, he has many of the complicated

GI issues that RSS kids have and they are the focus of his day to

day living, not having RSS. He also has learning problems which are

treated through medication, too. And he has his own happy memories

and experiences and has lived his life with lots of love, happiness

and good times. (He was one of the first RSS babies since gh was

made synthetically, not from cadavers, something that was not

available to the RSS adults who are members of this group. Many of

his issues were not thought to be related to RSS, but now they are

common-place, such as reflux, gut dysmotility, LD, etc.)

As for gh NOT increasing adult height, I, again, disagree, but you

are entitled to your opinions. Both Dr. Stanhope and Dr.

Harbison agree that gh does, indeed, increase final height, although

they cannot tell by how much. I do know, after years of living with

RSS and after being a consultant with Dr. H. at the past three MAGIC

conventions, and working for years behind the scenes with

Salem, that some of those TEENS who have not used gh and are now at

a final height of less than 4'8 " regret not using them - and are

angry that they were not told of the advantages that they offer.

Can we guarantee that there will be no problems years from now?

No. Are they considered to be safe for use now? Yes. Have they

helped MY child? Absolutely. He went from a scrawny, hypoglycemic,

very tiny child to a 5' fifteen year old who has at least 4 more

inches to go. We always said that even if gh gave Max 1 more inch,

it would be worth it and he would be that much taller - important

especially for a boy. AGAIN, I stress, that it was our decision and

not right for everyone. But to tell people that " research shows

that gh does not increase final height " is not correct and this is

stated by two of the world's experts on RSS.

As for the " midget " thing, I NEVER suggested to ANYONE that their

child be referred to as a midget- or a dwarf, for that matter. What

I was pointing out was that after years of experience, consults with

psychologists, psychiatrits and educational professionals, not

including myself, we have learned that children hear and interpret

things not in the way we think they do. They have their own visions

of what a dwarf is and they do not like it. It is bad enough that

they have RSS and associated issues with it, so referring to them as

having a growth disorder helps them to understand it better and for

them and others to accept it in a more positive way. For example,

and using my own son again, Max has pointed ears and was for a long

time teased by his peers by them calling him a dwarf, pixie or

leprechaun. (We did not know this until about a year or so ago.)

He was smaller than they were, he has red hair, and, as I said, has

these pointy ears. He was mortified and refused to wear certain

clothes because he thought they accentuated the problem. We had no

idea. I would not want him to live that again.

I repeat, we will probably always disagree, and that is okay. What

we do have to do, however, is try to support each other and every

member of this listserve. Always keep in mind that there are new

people reading the posts every day and we have to be somewhat

careful as to what we post as fact, opinion or whatever.

Jodi Z.