Re: Possible RSS- new member post

[Guest guest]

Hi ,

I know you have had lots of replies already, but I thought I would

make myself known. I am a regular reader of this board, but do not

seem to post much these days (should do more often!).

Our daughter, , is 3 yrs old and has RSS. She is currently

22lbs and 85cm high. We live in Kingston Upon Thames, in Surrey, so

please feel free to get in touch if there's any way we can help.

was also IUGR spotted at 20 weeks, and we eventually got her

to 34+5 before she was deemed 'better out than in' and was delivered

by elective c-section, weighing 3lbs 15oz. She was diganosed as RSS

at 6 months after showing no catch-up growth, and continued low

weight gain, feeding issues etc, as well as displaying a good number

of the physical characteristics, weight/height below 0.4th

percentile, head cicumference on 60th percentile, large forehead,

small ears, triangular face, curved little finger. Although

does have asthma and suffers a lot from coughs/colds etc, we have

generally been lucky with her development so far, and she is

certinaly improving as she gets older, i.e. she now eats something,

not much, but much better than she used to! Feeding remains our

biggest issue, but as you will have read, that is just the norm with

RSS kids!

I know Kim mentioned before, I would defintely recommend contacting

the Child Growth Foundation in the UK, they have a very good support

network for RSS/IUGR and can put you in touch with other families in

your area/or with similar aged children. They also organise an

annual convention (next one is on 1st Oct 05) which is a great forum

to learn more and meet more families. CGF can be contacted on 020

8995 0257 and the best person to speak to is Child (more

details on http://www.charitiesdirect.com/charity2/ch000262.htm)

Look forward to hearing moer about Stirling in time,

all the best

mum to , RSS, 3yrs, 22lbs, 85cm, London, UK

>

> Hello, this is my first post here.My name is from

borough

> in the UK.

>

> My son Stirling is now 5mths old, weighing 9lb 5oz. He has

> suspected RSS due to his struggle to gain weight since birth (b/w

> 5/lb 3oz). He is classed as a 'Failure to Thrive' by the

> Paediatrician, although we have been seen by a different one who

> noticed the RSS traits. He was an early diagnosed IUGR baby, born

> at 38 weeks. According to the Obstetrician, he did very well to

get

> that far as he was expected to be born around 28-30wks!

>

> We are currently awaiting results of a chromosome test (UPD 7 I

> think) to determine whether he has RSS, however, it is strongly

> suspected as he has 5 of the 7 universal traits mentioned on RSS

> Kids site.

>

> Am I right in thinking that this test is likely to come back

> negative as it only detects 10% of RSS cases, and that a negative

> test doesn't rule out RSS?

>

> Also are UTI infections anything to do with RSS as he is currently

> being treated for his 2nd one?

>

> Cheers for now

> T