Re: Hello from Scotland UK

[Guest guest]

Hi. Welcome to the group. Ihave a 2 yr old RSS daughter Autumn (5 6

birth), a 6.5 mos old SGA daughter Summer (4 13 birth weight) and 2

boys,Skye and Ocean. Autumn was thought to have RSS at 7 mos and was

diagnosed after everyting was ruled out, that was a little after a

year old. She is now 17 lbs 10 oz and is struggling with weight. She

is 30.25-30.50 inches and has maintained below the percentiles.

Summer is seeing a genetcist next week because she is maintaining

below the charts. I know this is a really tough time for you. It

is hard when there are no immediate definitive answers. The waiting

game is so difficult. Hang in there.

>

> Hello everyone,This is the first time I have posted.I have a 15mth

old

> daughter Morven who may have RSS.We are at that stage still that

the

> Medical Proffesion still cant give me an answer.As you all probably

> know its a horrible time full of tears and uncertainty.

>

> Morven was only 4lb 2oz at birth and has been putting weight on

slowly

> since then.She now weighs 18lb.The only thing thats really unusual

is

> that her height has caught up and she is now in the 50th

> percentile.When she was born she wasnt on any percenticle.But she

does

> have other things that make them think she does has it.Web

toe,blueish

> tint to whites of eyes,reflux.She does have a ponted chin but so do

I.

>

> Here in Scotland no one seems to know much about it and we dont

know

> where to turn for answers.We feel we should be doing something for

her.

>

> Look forward to hearing from anyone with advice.

>

[Guest guest]

Hello again.

SGA is something that was never mentioned to me until I spoke with

the Growth Foundation in London.I think there is quite a lot of

similarities in RSS and SGA.

I know it doesnrt mater and she is who she is and nothing will

change if she does have it but you just want a name and answers.

I love your childrens names so unusual.

> >

> > Hello everyone,This is the first time I have posted.I have a

15mth

> old

> > daughter Morven who may have RSS.We are at that stage still that

> the

> > Medical Proffesion still cant give me an answer.As you all

probably

> > know its a horrible time full of tears and uncertainty.

> >

> > Morven was only 4lb 2oz at birth and has been putting weight on

> slowly

> > since then.She now weighs 18lb.The only thing thats really

unusual

> is

> > that her height has caught up and she is now in the 50th

> > percentile.When she was born she wasnt on any percenticle.But

she

> does

> > have other things that make them think she does has it.Web

> toe,blueish

> > tint to whites of eyes,reflux.She does have a ponted chin but so

do

> I.

> >

> > Here in Scotland no one seems to know much about it and we dont

> know

> > where to turn for answers.We feel we should be doing something

for

> her.

> >

> > Look forward to hearing from anyone with advice.

> >

>

[Guest guest]

There is an RSS adult from Scotland. Her name is Kim. She used to post a lot

on here, but

has not lately. Perhaps she is lurking and will see your post. She's a lovely

woman. Very

happy and nice to talk to.

Jodi Z

[Guest guest]

Hi,

I know it is a long way but in London, there is a Dr. Stanhope at the

Child Growth Foundation/Great Ormond Street Hospital. He is one of

the few experts at diagnosing and treating children who are SGA/RSS.

He has publihed many papers on the subject. Perhaps you could arrange

an appointment with him.

I remember there was a family from Ireland on the list and that is

what they were able to do.

As for Kim from Scotland, it appears she is no longer a member of

this group unless she has changed her id and I can't locate her in

the membership list.

I hope this helps.

Ken M

>

> Hello everyone,This is the first time I have posted.I have a 15mth

old

> daughter Morven who may have RSS.We are at that stage still that

the

> Medical Proffesion still cant give me an answer.As you all probably

> know its a horrible time full of tears and uncertainty.

>

> Morven was only 4lb 2oz at birth and has been putting weight on

slowly

> since then.She now weighs 18lb.The only thing thats really unusual

is

> that her height has caught up and she is now in the 50th

> percentile.When she was born she wasnt on any percenticle.But she

does

> have other things that make them think she does has it.Web

toe,blueish

> tint to whites of eyes,reflux.She does have a ponted chin but so do

I.

>

> Here in Scotland no one seems to know much about it and we dont

know

> where to turn for answers.We feel we should be doing something for

her.

>

> Look forward to hearing from anyone with advice.

>

[Guest guest]

Hi Kim,

Ive actually been to Orkney and Kirkwall a few years ago we stayed in

Stromness.What a beautiful place and wondeful wildlife though a bit of a treck

from Glasgow.

Your website that you are setting up sounds like a fantastic idea.

I will go and look at pics and will send you one of Morven(Good old ish

name)if you like.

Bye

kmerrith wrote:

Hi Kim,

YOU ARE HERE !!!

I did a search of the group members and I could not find you. I

thought you had unsubscribed for a while. Sorry about that.

Glad you are still with us !

Ken M

Hello everyone,This is the first

time I have posted.I have a 15mth old

> daughter Morven who may have RSS.We are at that stage still that

the

> Medical Proffesion still cant give me an answer.As you all probably

> know its a horrible time full of tears and uncertainty.

>

> Morven was only 4lb 2oz at birth and has been putting weight on

slowly

> since then.She now weighs 18lb.The only thing thats really unusual

is

> that her height has caught up and she is now in the 50th

> percentile.When she was born she wasnt on any percenticle.But she

does

> have other things that make them think she does has it.Web

toe,blueish

> tint to whites of eyes,reflux.She does have a ponted chin but so do

I.

>

> Here in Scotland no one seems to know much about it and we dont

know

> where to turn for answers.We feel we should be doing something for

her.

>

> Look forward to hearing from anyone with advice.

>

>

>

>

>

>

>