Re: Possible RSS- new member post

[Guest guest]

Hi ,

Welcome to our group.

I hope we can answer your questions.

Yes, you are right. UPD #7 occurs in only about 10% of RSS. Children

who are UPD#7 usually have a milder form of RSS. Not having UPD#7

does not rule out RSS.

As far as I know, UTI's do not have anything do with RSS.

Just in case you want a second opinion or for some reason you want to

see another pediatric endocrinologist, one of the few experst on RSS

is a Dr. Stanhope in London, UK. Given that you have already done

some research on this topic, you probably already knew that.

I hope this helps.

Ken M

>

> 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

[Guest guest]

Hi

Welcome to this group, I hope you get lots of information and

support from us.

My names Jody, we live in Australia, our son Liam is now 3yrs

9mnths, Liam was diagnosed at about 4 months, has most of the traits

mentioned on the Magic foundation website.

Please ask us lots of questions, thats how most of us have learnt. I

cant answer about the UTIs except to say many of these kids do have

problems with kidneys, bladder, or ureters. Liam doesnt though, so I

cnat help much there.

Happy Easter! Have a look at some photos, we think RSS kids are

exceptionally gorgeous!!! Not to mention the personalities !!! They

dont include this in the traits.

Jody(mum to Liam 86cm 11.5kg, ght, zoton, gtube and Cameron 6)

>

> 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

[Guest guest]

Hi

My name is Brigitte from Ware, Hertfordshire. My daughter Bobbi is 12.5 months

old, and was diagnosed by a Geneticist, and tested positive for the UPD7

chromosome disomay, and yes only abut 10% of RSS cases test positive. Bobbi was

born at 37 weeks weighing only 3lb 1oz and is currently 12lb 5oz (with clothes)

we have struggled with her feeding since birth and she suffers with reflux also,

does Stirling have any feeding difficulties? If you have any further questions

you can e mail me privately at brigitte.foreman@...

Brigitte

From: sickybear

To: RSS-Support

Sent: Friday, March 25, 2005 8:48 PM

Subject: Possible RSS- new member post

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

[Guest guest]

Welcome, . I am so glad that you found us. This is like one

great big family and we are all here for each other. We may not

always agree, but that is okay, too.

I am the mom of a 19 year old (no RSS) and a 16 year old (the famous

Max who does have RSS). I say famous because I am always posting

about the trials and tribulations with Max - and have for years. I

almost feel like the grandmother of the group!

Have you checked out the website for the MAGIC Foundation? Just go

to www.magicfounation.org. It has a wealth of info and there are

hundreds of RSS/SGA families who are members. SGA stands for small

for gestational age and these children are very similar in treatment.

Jodi Z

[Guest guest]

Hey my name is kim and i'm a 26 year old adult with rss. i live on the

Orkney islands in Scotland. Have you got in touch with the Child Growth

Foundation in the UK? They have lots of info and a rss/iugr division. If you

want details or just to chat feel free to post on the listserve or email me

privately.

sickybear wrote:

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

[Guest guest]

Hi ,

My name is , I am from Scotland. My son Blair (almost 18 months) was

diagnosed as RSS at 12 months old. He had the UPD test done which came back

negative but I am in no doubt that he has RSS. He has very few of the traits and

is a very healthy, happy little (tiny, tiny) boy.

I'm sure you have loads of questions you would like to ask. Please feel free

to email me privately (_2910@..._ (mailto:2910@...) ).

Best wishes

[Guest guest]

Hi

welcome to the group. My name is Alison and my son Charlie was

diagnosed with RSS according to the traits he showed at 14 months and

then confirmed with DNA testing (UPD 7 positive) at 20 months. Charlie

is very prone to UTI's and has had several that he was hospitalised

for in his first year of life. He is now 21 months and has been on

preventative antibiotics (low dose of Keflex) for about 1 year. Kidney

problems are a " less common " trait of RSS but a trait all the same.

Charlie's kidney problems were discovered before he was born and he

has regular CT scans and nuclear imaging tests to check progress. Good

luck with your son - the early days of not knowing for sure and all

the doctors' opinions and questions can be very stressful but the path

becomes smoother and as others have said - these kids are absolutely

fabulous kids!

Alison in Australia ( 3 yrs and Charlie 21 months RSS upd 7, G

Tube, almost GHT!)