Re: Research possibility

[Guest guest]

FYI at the convention: It is one of the networking topics we will be

talking about. And I will also be addressing it in my introduction

in relation to " fundraising " - the dreaded word.

Here is an interesting question I thought of. How many RSS children

are IUGR and are delivered EARLY at 33-36 weeks because doctors think

they would grow better OUTSIDE than inside. Then we find out they

don't grow better outside than inside, and for their long-term

health, it probably would have been better for them to stay INSIDE

until 38-40 weeks, albeit growing slowly but lungs improving, brain

growing, etc.

if the child is asymmetric, then by educating physicians, that could

be seen on an ultrasound and maybe then they would know to

maybe " leave the baby in to cook longer. " The problem is that the

vast majority of IUGR babies are delivered early because they DO

catch-up better outside. We just have to figure out is there a way

to determine regular IUGR from RSS in-utero?

Interesting question.

> Irene,

> I too was a little surprised, but delighted that there is as

much

> interest in RSS. At first we were so traumatized at " a " diagnosis,

but after

> visiting Geneticists and Endo's we were happy that it was RSS after

all. Not

> to belittle the growth disorder, but I thank God all the time that

Jessie is

> not facing anything worse. She is such a little angel. And I do

still

> stress little, but hopefully Gh will help that.

> On a similar note, my husband is involved with the medical

profession

> and had the idea that perhaps finding a medical student or resident

looking

> for a research involvement might be able to work with all the

information we

> parents have (on this listserv) and have found out from specialists

around

> the world. Couple this with all the individual experiences we have

had with

> raising our children. We mentioned this to our Endo because she is

attached

> to the Children's Regional Hospital that is part of a teaching

hospital. Her

> answer shocked us when she said she thought it a wonderful idea and

research

> opportunity and that she herself would be interested in doing it.

She wanted

> to wait until a new hire had been brought on to her team, but she

personally

> was interested.

> Whether, Dr. Satin- be the one or some eager medical

tech or

> research student....I have always felt that we have a wealth of

information

> available through us that could help move the RSS understanding and

cure

> forward. What 350+ RSS children, seeing over probably double that

number of

> doctors and specialists, with 700+ parents experiences and

knowledge, wow. I

> guess we could talk about this in Chicago?

>

>

>

>

[Guest guest]

In my case, they delivered my twins at 33 weeks because wasn't

growing. Not only did he not grow better outside the womb, I am

entirely convinced that my daughter's OT issues are entirely related

to being premature for no good reason.

This is a topic that makes me want to scream!!!!!!!!!!!

Judith, Steve, (RSS) and (non RSS) 29 mo twins

> > Irene,

> > I too was a little surprised, but delighted that there is

as

> much

> > interest in RSS. At first we were so traumatized at " a "

diagnosis,

> but after

> > visiting Geneticists and Endo's we were happy that it was RSS

after

> all. Not

> > to belittle the growth disorder, but I thank God all the time

that

> Jessie is

> > not facing anything worse. She is such a little angel. And I do

> still

> > stress little, but hopefully Gh will help that.

> > On a similar note, my husband is involved with the medical

> profession

> > and had the idea that perhaps finding a medical student or

resident

> looking

> > for a research involvement might be able to work with all the

> information we

> > parents have (on this listserv) and have found out from

specialists

> around

> > the world. Couple this with all the individual experiences we

have

> had with

> > raising our children. We mentioned this to our Endo because she

is

> attached

> > to the Children's Regional Hospital that is part of a teaching

> hospital. Her

> > answer shocked us when she said she thought it a wonderful idea

and

> research

> > opportunity and that she herself would be interested in doing it.

> She wanted

> > to wait until a new hire had been brought on to her team, but she

> personally

> > was interested.

> > Whether, Dr. Satin- be the one or some eager medical

> tech or

> > research student....I have always felt that we have a wealth of

> information

> > available through us that could help move the RSS understanding

and

> cure

> > forward. What 350+ RSS children, seeing over probably double

that

> number of

> > doctors and specialists, with 700+ parents experiences and

> knowledge, wow. I

> > guess we could talk about this in Chicago?

> >

> >

> >

> >

[Guest guest]

Judith,

I was in the same boat as you. My kids came at 33 weeks 4 days and the only

reason for the delivery was that wasn't growing. The drs. felt for

the sake of their little brother, that would grow better out than

in. Fortunately, and Jen haven't had any issues other than slight

speech delays, but that's it. I would be really mad if they had stuff too

just because we decided to take the kids early cause of . Medically,

I was doing well and could have gone further if need be. I do often wonder

if would have less problems, though, if my kids were born later.

For example, hearing loss is sometimes due to prematurity. Would

still be deaf is my kids came at 36 weeks? Or, did we make a good move

taking them at 33 weeks 4 days due to 's scoliosis. His back could

possibly be much worse if we left him in me longer. One will never know.

Cheryl

Mom to Jen, , and - all 4 years old