Re: New To RSS

[Guest guest]

hi kim!!

welcome to our great big family!! actually there are a couple of

families on here from australia and i am sure they will respond!!

jody and here family actually were at the convention last year from

australia!! ask away any questions!! i have a 4yr old boy,

christopher who is rss and 2 other boys nicholas-7 and johnathon-

22months that are nonrss. once again welcome!!

jodie c (one of 4 jodis on the list)

> Hi Everyone! I am writing from Sydney Australia. I dont know if

this is

> just an American group or not but I am finding it hard to get any

> information here in Sydney. My soon to be 1 (next week) year old

> daughter Jasmine has just been clinically diagnosed with RSS and

we are

> now waiting on blood test results as well. My husband Wayne and I

also

> have a little 4 yr old boy as well named Jaidyn. We are looking up

> websites and any other information we can get, though it seems to

all

> come to a dead end. We have been to the genetician and they are

looking

> at seeing her in a year and the paediatrician is really not coming

> across as full of information.I know an Endocrinologist is a must

> though trying to get someone who is familiar with this is hard. I

found

> the MAGIC Foundation website fantastic and the Convention seems

> fabulous! I was reading a message from regarding people

asking

> about size etc and that is so common for myself too. Everyone

assumes

> she is premmy and when you say no they look at you as if to

say " well

> whats wrong with her " or " I'll take her home and feed her up

properly " .

> It can be quite distressing. Jasmine is now 12 months and

currently at

> 5.6 kilos. She is an absolute beautiful little girl and as soon as

I

> have more time I will send a picture through. I looked at the

photo

> album and they are all cuties!! Hopefully there is someone who

knows

> someone in Australia or has some information to help us out.

> Kim

[Guest guest]

Hi Kim,

Welcome to our group.

No this is not just an American list. There are people from all over

the world on this list, even Canada. (HI Deb). There are some

families here from Austrailia. I think one or 2 are in or near

Sydney. Hopefully they will contact you soon.

My son is almost 8. He is doing very well. I too remember getting odd

looks from people when would say he is 1 or 2. My wife often got

comments about not feeding him enough, when in fact we were at times

over feeding him.

Don't hold out too much hope for the blood test telling you anything.

Only about 1 in 10 RSS kids have RSS as a result of getting two #7

chromosones from you. This is called Uniparental Disomy (UPD #7), if

I remember right. Otherwise, there is no test to prove or disprove

RSS. So we are all mostly coping with a " best guess " type of

diagnosis. Regardless if your daughter is RSS or SGA (Small For

Gestesnial Age), the treatment is the same. Increase calories as best

you can, if it is available try periactin as an appetite stimulant,

and maybe later (again depending on your values) growth hormone.

Periactin and growth hormone has been a very big help to my son.

Others have decided against growth hormone and their children are

just fine.

Many children have not been as lucky as my son and they have needed a

feeding tube. While it is usually a very hard decision to make, in

the end almost all parents have been glad they went with a feeding

tube. This maybe something you might have to consider in the future.

There are plenty of people here who can recount their experiences and

provide guidance.

Last, many RSS kids need physical therapy to help with the low muscle

tone. This can cause them to be late in walking and talking etc. This

was the case with my son. We found it necessary to seek out some

community services through a program called Early Intervention. They

provided physical therapy, nutrition counseling, and later speech

therapy. Perhaps there is similar services in Sydney and you can

contact them for some help.

Hopefully, some of our Austrialian members will be in touch soon.

I hope this helps.

Ken M

> Hi Everyone! I am writing from Sydney Australia. I dont know if

this is

> just an American group or not but I am finding it hard to get any

> information here in Sydney. My soon to be 1 (next week) year old

> daughter Jasmine has just been clinically diagnosed with RSS and we

are

> now waiting on blood test results as well. My husband Wayne and I

also

> have a little 4 yr old boy as well named Jaidyn. We are looking up

> websites and any other information we can get, though it seems to

all

> come to a dead end. We have been to the genetician and they are

looking

> at seeing her in a year and the paediatrician is really not coming

> across as full of information.I know an Endocrinologist is a must

> though trying to get someone who is familiar with this is hard. I

found

> the MAGIC Foundation website fantastic and the Convention seems

> fabulous! I was reading a message from regarding people

asking

> about size etc and that is so common for myself too. Everyone

assumes

> she is premmy and when you say no they look at you as if to

say " well

> whats wrong with her " or " I'll take her home and feed her up

properly " .

> It can be quite distressing. Jasmine is now 12 months and currently

at

> 5.6 kilos. She is an absolute beautiful little girl and as soon as

I

> have more time I will send a picture through. I looked at the photo

> album and they are all cuties!! Hopefully there is someone who

knows

> someone in Australia or has some information to help us out.

> Kim

[Guest guest]

Kim, welcome! My name is Salem and I have a 9 year old

daughter with RSS. If you write me privately at

magicrss@... and ask me " for the names of anyone in

Australia or New Zealand " I can officially respond with their

names. I can't do it here, because this is not an official MAGIC

listserve. Does that make sense?

But anyway, we have a great group of VERY ACTIVE RSS parents in

Australia and New Zealand. The New Zealand folks have been in all

the local newspapers as they fight for GH coverage. Several of the

families travel each year to the convention in July in Chicago. I

would love to hook you up with them, via email. But also,

obviously, stay right here!!

Welcome!

> Hi Everyone! I am writing from Sydney Australia. I dont know if

this is

> just an American group or not but I am finding it hard to get any

> information here in Sydney. My soon to be 1 (next week) year old

> daughter Jasmine has just been clinically diagnosed with RSS and

we are

> now waiting on blood test results as well. My husband Wayne and I

also

> have a little 4 yr old boy as well named Jaidyn. We are looking up

> websites and any other information we can get, though it seems to

all

> come to a dead end. We have been to the genetician and they are

looking

> at seeing her in a year and the paediatrician is really not coming

> across as full of information.I know an Endocrinologist is a must

> though trying to get someone who is familiar with this is hard. I

found

> the MAGIC Foundation website fantastic and the Convention seems

> fabulous! I was reading a message from regarding people

asking

> about size etc and that is so common for myself too. Everyone

assumes

> she is premmy and when you say no they look at you as if to

say " well

> whats wrong with her " or " I'll take her home and feed her up

properly " .

> It can be quite distressing. Jasmine is now 12 months and

currently at

> 5.6 kilos. She is an absolute beautiful little girl and as soon as

I

> have more time I will send a picture through. I looked at the

photo

> album and they are all cuties!! Hopefully there is someone who

knows

> someone in Australia or has some information to help us out.

> Kim

[Guest guest]

Welcome Kim. You have found a wonderful family for support, advice and

compassion. As you know by now, this is not just an American group.

B

5 and Kelli 2 3/4

wayne wrote:

Hi Everyone! I am writing from Sydney Australia. I dont know if this is

just an American group or not but I am finding it hard to get any

information here in Sydney. My soon to be 1 (next week) year old

daughter Jasmine has just been clinically diagnosed with RSS and we are

now waiting on blood test results as well. My husband Wayne and I also

have a little 4 yr old boy as well named Jaidyn. We are looking up

websites and any other information we can get, though it seems to all

come to a dead end. We have been to the genetician and they are looking

at seeing her in a year and the paediatrician is really not coming

across as full of information.I know an Endocrinologist is a must

though trying to get someone who is familiar with this is hard. I found

the MAGIC Foundation website fantastic and the Convention seems

fabulous! I was reading a message from regarding people asking

about size etc and that is so common for myself too. Everyone assumes

she is premmy and when you say no they look at you as if to say " well

whats wrong with her " or " I'll take her home and feed her up properly " .

It can be quite distressing. Jasmine is now 12 months and currently at

5.6 kilos. She is an absolute beautiful little girl and as soon as I

have more time I will send a picture through. I looked at the photo

album and they are all cuties!! Hopefully there is someone who knows

someone in Australia or has some information to help us out.

Kim

---------------------------------

[Guest guest]

Hi Kim

Just in case you didnt get the email I sent to you privately!

My names Jody, we have a nearly 4 year old Liam who has RSS, live on

the Central Coast, just north of Sydney.

If you didnt get the email with my phone number in it, email me and

I will send it again.

There is a few of us in Australia, and im sure we can share lots of

experiences.

Jody( mum to Liam and cameron)

> Hi Everyone! I am writing from Sydney Australia. I dont know if

this is

> just an American group or not but I am finding it hard to get any

> information here in Sydney. My soon to be 1 (next week) year old

> daughter Jasmine has just been clinically diagnosed with RSS and

we are

> now waiting on blood test results as well. My husband Wayne and I

also

> have a little 4 yr old boy as well named Jaidyn. We are looking up

> websites and any other information we can get, though it seems to

all

> come to a dead end. We have been to the genetician and they are

looking

> at seeing her in a year and the paediatrician is really not coming

> across as full of information.I know an Endocrinologist is a must

> though trying to get someone who is familiar with this is hard. I

found

> the MAGIC Foundation website fantastic and the Convention seems

> fabulous! I was reading a message from regarding people

asking

> about size etc and that is so common for myself too. Everyone

assumes

> she is premmy and when you say no they look at you as if to

say " well

> whats wrong with her " or " I'll take her home and feed her up

properly " .

> It can be quite distressing. Jasmine is now 12 months and

currently at

> 5.6 kilos. She is an absolute beautiful little girl and as soon as

I

> have more time I will send a picture through. I looked at the

photo

> album and they are all cuties!! Hopefully there is someone who

knows

> someone in Australia or has some information to help us out.

> Kim

[Guest guest]

Hi Kim, Welcome! My name is and I have a 15.5 mos old RSS

daughter named Autumn. She also had the blood tests done back when

she was 7 mos and they came back negative for the UPD7, but only 10%

of RSS kids test positive for it. This is a great group that has

helped me out since we first heard of RSS. I don't know what I would

have done without everyone. Not many know anything about it and

some doctors I have found just search the internet and come up with

incorrect information so this group is a great way to educate

yourself correctly and help educate doctors that are willing to

listen. Happy Birthday Jasmine!

mom to Autumn 15.5 mos RSS, Skye 6 1/2, Ocean 2 1/2, baby

girl due in July

> Hi Everyone! I am writing from Sydney Australia. I dont know if

this is

> just an American group or not but I am finding it hard to get any

> information here in Sydney. My soon to be 1 (next week) year old

> daughter Jasmine has just been clinically diagnosed with RSS and we

are

> now waiting on blood test results as well. My husband Wayne and I

also

> have a little 4 yr old boy as well named Jaidyn. We are looking up

> websites and any other information we can get, though it seems to

all

> come to a dead end. We have been to the genetician and they are

looking

> at seeing her in a year and the paediatrician is really not coming

> across as full of information.I know an Endocrinologist is a must

> though trying to get someone who is familiar with this is hard. I

found

> the MAGIC Foundation website fantastic and the Convention seems

> fabulous! I was reading a message from regarding people

asking

> about size etc and that is so common for myself too. Everyone

assumes

> she is premmy and when you say no they look at you as if to

say " well

> whats wrong with her " or " I'll take her home and feed her up

properly " .

> It can be quite distressing. Jasmine is now 12 months and currently

at

> 5.6 kilos. She is an absolute beautiful little girl and as soon as

I

> have more time I will send a picture through. I looked at the photo

> album and they are all cuties!! Hopefully there is someone who

knows

> someone in Australia or has some information to help us out.

> Kim

[Guest guest]

Hi Kim, I'm - Stirling is my 7mth old we also have a 3yr old

daughter called Sharleen, Mr T is called ! He has also been

recently diagnosed with RSS. We are also awaiting UPD7 results.

We're in borough, England. I'm glad I found this group, as the

support and information from others in the same boat is amazing.

Actually the dr who spotted Stirling's RSS is also Australian

(Spooky or what?)

cheers for now

T (Stirling 7mths RSS, Sharleen 3 Non-RSS)

> Hi Everyone! I am writing from Sydney Australia. I dont know if

this is

> just an American group or not but I am finding it hard to get any

> information here in Sydney. My soon to be 1 (next week) year old

> daughter Jasmine has just been clinically diagnosed with RSS and

we are

> now waiting on blood test results as well. My husband Wayne and I

also

> have a little 4 yr old boy as well named Jaidyn. We are looking up

> websites and any other information we can get, though it seems to

all

> come to a dead end. We have been to the genetician and they are

looking

> at seeing her in a year and the paediatrician is really not coming

> across as full of information.I know an Endocrinologist is a must

> though trying to get someone who is familiar with this is hard. I

found

> the MAGIC Foundation website fantastic and the Convention seems

> fabulous! I was reading a message from regarding people

asking

> about size etc and that is so common for myself too. Everyone

assumes

> she is premmy and when you say no they look at you as if to

say " well

> whats wrong with her " or " I'll take her home and feed her up

properly " .

> It can be quite distressing. Jasmine is now 12 months and

currently at

> 5.6 kilos. She is an absolute beautiful little girl and as soon as

I

> have more time I will send a picture through. I looked at the

photo

> album and they are all cuties!! Hopefully there is someone who

knows

> someone in Australia or has some information to help us out.

> Kim

[Guest guest]

Hi Kim and welcome to this great group. You wil learn so much just

from being on this listserve that you will soon have so much

information you won't know what to do! LOL. )

I have a son who will be 3 on the 23rd of this month. His name is

and there is a baby picture posted of him. He is 32 " and

weighs 22.4 lbs. He is pretty small, even compared to some of the

other RSS kids. But, he is managing things pretty well. We always

get the comments too. I think we all do, but it is very

frustrating. Usually people will say to me, :Awww, he's so cute.

How old is he? " And I'll say almost 3. Then they go, " Wow, he

really is small. Was he premature? " I get so tired of it I just

simply answer " Yep, he was. " , most of the time. Because he really

was. He was born at 34 weeks. I just don't like to go into a lot of

detail with complete strangers.

Anyway, I hope you continue to hang around here and get to know

everyone. I am sure others can help you with physicians around your

area. I can't wait to see a picture of Jasmine! )

Jodi R.

, 3-RSS, J tube, prilosec, and ornery!

, 5-nonRSS, but a little small too.

> Hi Everyone! I am writing from Sydney Australia. I dont know if

this is

> just an American group or not but I am finding it hard to get any

> information here in Sydney. My soon to be 1 (next week) year old

> daughter Jasmine has just been clinically diagnosed with RSS and we

are

> now waiting on blood test results as well. My husband Wayne and I

also

> have a little 4 yr old boy as well named Jaidyn. We are looking up

> websites and any other information we can get, though it seems to

all

> come to a dead end. We have been to the genetician and they are

looking

> at seeing her in a year and the paediatrician is really not coming

> across as full of information.I know an Endocrinologist is a must

> though trying to get someone who is familiar with this is hard. I

found

> the MAGIC Foundation website fantastic and the Convention seems

> fabulous! I was reading a message from regarding people

asking

> about size etc and that is so common for myself too. Everyone

assumes

> she is premmy and when you say no they look at you as if to

say " well

> whats wrong with her " or " I'll take her home and feed her up

properly " .

> It can be quite distressing. Jasmine is now 12 months and currently

at

> 5.6 kilos. She is an absolute beautiful little girl and as soon as

I

> have more time I will send a picture through. I looked at the photo

> album and they are all cuties!! Hopefully there is someone who

knows

> someone in Australia or has some information to help us out.

> Kim

[Guest guest]

Hi Kim, Our Dr is in England. His name is Dr Ian Shellshear, I

believe he was working in Townsville (i think in Queensland, but not

sure) He hasn't been here long though. Although he isn't an RSS

expert, he was able to recognise it in Stirling as he had come

across a case years ago in Australia. He has now referred us to the

experts in Cambridge for treatment etc.

Cheers for now

T:)

> Hi ,

>

> Thank you for your email it is so great to know there are so many

others out there. Do you mind me asking if you actually saw the

doctor who diagnosed Stirling in Australia or is he in England now?

>

> Kim mum of Jasmine 1 RSS 12lbs and Jaidyn 4 non RSS

>