hello from scotland.

[Guest guest]

Hi there. We have a 15 month old daughter who was diagnosed RSS at

9months old.Her name is Lily.We live in Sheffield and have just

found this site and am going to contact the growth foundation too.

Lily is only 13lb 8oz and was 4lb 11oz at birth. She is short and

has delayed motor skills and is very reluctant to eat.....You need

to do some more work and find someone who knows about this.Our

paediatrician has been great at referring us to

genetics,endocrinologists,dietiecains,physios,but does not know much

more than us.We have found Dr Stanhope at Great Ormand

Street Hospital and our paediatrician has referred us no probs.Dont

stop til you get answers......Lily had blue whites of eyes but that

had gone. She has small features and sticky out ears, and a slightly

large forhead.We saw a local endocrinolagist today for the first

time who was happy with her wieght and said that actually she had

got a bit of fat store around her arms, so we are doing something

right.We are besides ourselves with worry and the emotional impact

is behond belief..... But as I sit here tonight I think my Lily is

asleep in bed nice and cosy, her brother is snoring his head off,

dreaming of buzz lightyear and batman.She has had a good day and

things are getting better. Your child WILL be fine and it is you

that is suffering the most,not her. Be possitve and she will be

too..... Does your daughter have eating problems??? thats a biggy

with RSS. Keep asking the questions and keep looking for the

appropriate dr.Jayne Tolan xxx

[Guest guest]

Hi there,So good to hear from you and on the same island.

Thank you for your words of support it is a terrible time but a

wonderful time too(so confusing)because we dont have a diagnosis I

feel like a fraud but finding this site has helped so much already

and at least I can talk about it without breaking down.

Morven is a mystery.I told you she weights 17lb 150z ans was 75 cm

2mths ago and has grown since then.She had terrible reflux the first

seven months and feeding her is a very slow process but actually

does eat anything but not a lot of it although sometimes I wonder

where she can put it all. We do attend dietician who has been great

and Morven is still on Infatrini milk.She has 2 x 7ox bottles a day.

So far Morven has reached all the milestones except she doesnt walk

and is shuffling about on her bottom.

Morven has sticky out ears but so does her dad.She has fine features

and a ponted chin but them so do I.She has the webbed toe but others

in our family have that toe.This is the confusing thing and I think

thats why the Docs are reluctant to make a diagnosis.

She is a great wee girl though and has just screamed the swimming

pool down when we went to leave it there because she loved it so

much.it so nice to hear from other that have been in my

position.Friends can listen but dont understand.

Bye

>

> Hi there. We have a 15 month old daughter who was diagnosed RSS at

> 9months old.Her name is Lily.We live in Sheffield and have just

> found this site and am going to contact the growth foundation too.

> Lily is only 13lb 8oz and was 4lb 11oz at birth. She is short and

> has delayed motor skills and is very reluctant to eat.....You need

> to do some more work and find someone who knows about this.Our

> paediatrician has been great at referring us to

> genetics,endocrinologists,dietiecains,physios,but does not know

much

> more than us.We have found Dr Stanhope at Great Ormand

> Street Hospital and our paediatrician has referred us no

probs.Dont

> stop til you get answers......Lily had blue whites of eyes but

that

> had gone. She has small features and sticky out ears, and a

slightly

> large forhead.We saw a local endocrinolagist today for the first

> time who was happy with her wieght and said that actually she had

> got a bit of fat store around her arms, so we are doing something

> right.We are besides ourselves with worry and the emotional impact

> is behond belief..... But as I sit here tonight I think my Lily is

> asleep in bed nice and cosy, her brother is snoring his head off,

> dreaming of buzz lightyear and batman.She has had a good day and

> things are getting better. Your child WILL be fine and it is you

> that is suffering the most,not her. Be possitve and she will be

> too..... Does your daughter have eating problems??? thats a biggy

> with RSS. Keep asking the questions and keep looking for the

> appropriate dr.Jayne Tolan xxx

>