I can't let this one go - it's not a sad day at all

[Guest guest]

Ken,

With all due respect, I disagree. It is not a sad day, but, rather,

a reflective one that we must all consider. Here we had a person,

not knowing her involvement with RSS/SGA, coming onto us in a rather

strong fashion, trying to force ideas on us and, yes, coming across

in a threatening manner. We did not have the background info that

you had, she sent some rather strong opinions without sharing

anything personal or enlightening as other new members do, and the

potential for a huge problem was let out of the bag.

I realize that you are the moderator. It is a big responsibility

and one that I would not want to have. On the other hand, this

person was threatening to many people and no one was doing anything

to help tone her down and refocus in a way that would benefit us

instead of preaching to us and pointing out the " bad guys " in her

opinion.

We are a group of parents and RSS adults who want what is best for

our kids. We don't really know what is best. We are faced with

many decisions that are difficult to make and many times scary. We

don't need to have things thrown at us that make them even scarier.

We need to have an open forum where we can share our concerns,

feelings and opinions and be open to what others have to say.

I've lived in the " state of being " for over 16 years and it does not

get easier. In fact, it gets scarier because as time goes on, I

worry that the extended use of some of the meds will show their ugly

heads and Max will suffer. But my husband and I have made educated

decisions, considered our options and pushed ahead. As I've said

before, with each shot, we say a little prayer and hope that we are

doing the right thing. If Max does have a medical complication

further down the line, we will deal with it. But for now, we have

to consider his quality of life and what is best for HIM to be a

part of society.

We will continue to have issues like this as the years go by. No

one told Jill to leave. We just asked her to tone down and tell us

more about herself. This all happened too quickly. That makes me

skeptical. I think there is more at work here that either you, I or

anyone else knows but the person herself.

Jodi Z

[Guest guest]

Well said Jodi. I don't usually contribute much when there is a

controversy here but I had to chime in on this one. I think Jill

was too forward and probably doesn't realize what a close knit group

we are here. We all get defensive when we feel we're being attacked

for any reason... it's a very touchy subject but I believe that

there is a gentle way to broach any subject.

I'm one of the few parents here who's opted not to go the GHT

route and I have never once gotten a negative response from the

listserve. Medically it's the best choice for Olivia right now but

that could certainly change in a few years. On the flip side

Olivia's on a much more potent med, Pamidronate, for her OI. It's

an intraveinous med given every 3 months, 4 hours a day for, 3 days

in a row. It's a very new treatment and has only been in human

trials since 1998, since it was created in Canada a lot of the U.S.

kids go to Montreal to get their treatment and yes it's still in

it's trial stages. I wasn't comfortable with putting Olivia in a

study for a medicine that we have no way of knowing long term

effects over and above the 5 year mark.

Will I feel bad if something negative comes from it? Of cource.

Would I then regret giving my daughter the med? Not a chance. It

had given her a much better quality of life because her bones don't

ache, she has more energy and many more positives. It would have

also been worth it to help the children that are not yet born cope

with their issues from us being in this study.

I can only guess that many of you feel this way with the GHT.

Well I guess that was my two cents worth...

Blessings to everyone

Leah, mom to 9 years and Olivia 5 years, 34 " , 19lbs, RSS, OI,

lots of meds that we don't regret at all!

>

> Ken,

>

> With all due respect, I disagree. It is not a sad day, but,

rather,

> a reflective one that we must all consider. Here we had a person,

> not knowing her involvement with RSS/SGA, coming onto us in a

rather

> strong fashion, trying to force ideas on us and, yes, coming

across

> in a threatening manner. We did not have the background info that

> you had, she sent some rather strong opinions without sharing

> anything personal or enlightening as other new members do, and the

> potential for a huge problem was let out of the bag.

>

> I realize that you are the moderator. It is a big responsibility

> and one that I would not want to have. On the other hand, this

> person was threatening to many people and no one was doing

anything

> to help tone her down and refocus in a way that would benefit us

> instead of preaching to us and pointing out the " bad guys " in her

> opinion.

>

> We are a group of parents and RSS adults who want what is best for

> our kids. We don't really know what is best. We are faced with

> many decisions that are difficult to make and many times scary.

We

> don't need to have things thrown at us that make them even

scarier.

> We need to have an open forum where we can share our concerns,

> feelings and opinions and be open to what others have to say.

>

> I've lived in the " state of being " for over 16 years and it does

not

> get easier. In fact, it gets scarier because as time goes on, I

> worry that the extended use of some of the meds will show their

ugly

> heads and Max will suffer. But my husband and I have made

educated

> decisions, considered our options and pushed ahead. As I've said

> before, with each shot, we say a little prayer and hope that we

are

> doing the right thing. If Max does have a medical complication

> further down the line, we will deal with it. But for now, we have

> to consider his quality of life and what is best for HIM to be a

> part of society.

>

> We will continue to have issues like this as the years go by. No

> one told Jill to leave. We just asked her to tone down and tell

us

> more about herself. This all happened too quickly. That makes me

> skeptical. I think there is more at work here that either you, I

or

> anyone else knows but the person herself.

>

> Jodi Z

[Guest guest]

Ken,

I'm probably one of the ones you felt were not welcoming (I had the

email with the CAPS words occasionally!). I joined here to get ideas

and support and figure out what might work for my daughter. I get

nervous when someone crashes (and I haven't been around even a year

yet but even I try to recognize most posters name/email)and

preaches. You obviously were concerned enough to email her offline

first. We did not have that benefit. I'm sorry she left because she

apparently could have information that could have helped but she

seemed to be on a crusade. I am sorry if I offended anyone by my

email but I ignored the first but not the second.

Forget Drs signing an agreement - what about her comment on meds!

Why did she count someone's child's medications! Is she going to use

that information without consent? I think debate is good but there

is a time and place (I ignored all Kerry bashing on this

listserve from members and sat on my hands and did not respond and

Bush-bash in response) but this really bothered me. She never once

mentioned her child, diagnosis etc. She might have great knowledge

but if she cannot share it in a constructive way then she might as

well not have that knowledge. I don't care how much education

someone has (myself included) that doesn't do anything for me here -

I am a novice to RSS/SGA and just want to learn as does everyone else

and without feeling beaten upon.

That said, I feel sorry for her she left because she doesn't have the

great support all of you (and I) have from one another. And it is

true, Emerence is SGA and her geneticist feels, mild RSS. She eats

(but hasn't been gaining in a while - uh oh - starting up the weigh-

ins again) and doesn't have a tube. However, every day I think about

GH and medications and height to weight ratio and periactin and what

if she gets reflux and aspirates and how the HECK and I (a needle

phobe) going to inflict pain upon my daughter when we go GH? Maybe

she will come back...again, sorry if you are upset with me.

, mom to , 5 next week, Emerence SGA (Small Girl with

Attitude) poss RSS 22 mo. 18lb 11 oz 28.5 "

>

> Ken,

>

> With all due respect, I disagree. It is not a sad day, but,

rather,

> a reflective one that we must all consider. Here we had a person,

> not knowing her involvement with RSS/SGA, coming onto us in a

rather

> strong fashion, trying to force ideas on us and, yes, coming across

> in a threatening manner. We did not have the background info that

> you had, she sent some rather strong opinions without sharing

> anything personal or enlightening as other new members do, and the

> potential for a huge problem was let out of the bag.

>

> I realize that you are the moderator. It is a big responsibility

> and one that I would not want to have. On the other hand, this

> person was threatening to many people and no one was doing anything

> to help tone her down and refocus in a way that would benefit us

> instead of preaching to us and pointing out the " bad guys " in her

> opinion.

>

> We are a group of parents and RSS adults who want what is best for

> our kids. We don't really know what is best. We are faced with

> many decisions that are difficult to make and many times scary. We

> don't need to have things thrown at us that make them even

scarier.

> We need to have an open forum where we can share our concerns,

> feelings and opinions and be open to what others have to say.

>

> I've lived in the " state of being " for over 16 years and it does

not

> get easier. In fact, it gets scarier because as time goes on, I

> worry that the extended use of some of the meds will show their

ugly

> heads and Max will suffer. But my husband and I have made educated

> decisions, considered our options and pushed ahead. As I've said

> before, with each shot, we say a little prayer and hope that we are

> doing the right thing. If Max does have a medical complication

> further down the line, we will deal with it. But for now, we have

> to consider his quality of life and what is best for HIM to be a

> part of society.

>

> We will continue to have issues like this as the years go by. No

> one told Jill to leave. We just asked her to tone down and tell us

> more about herself. This all happened too quickly. That makes me

> skeptical. I think there is more at work here that either you, I

or

> anyone else knows but the person herself.

>

> Jodi Z