Re: Daughter has just been diagnosed

[Guest guest]

I do not yet have a child with RSS (we are hoping to adopt a girl with RSS

soon). I just want to offer my support. This forum is wonderful and supportive

and I think you will find a lot of peace here.

Take care,

J

[Guest guest]

To Brigette

just a very quick reply[off to pick children up from school]Are you a member

of the child growth foundation?This saturday coming in their annual

conference in London.There will be speakers who are very knowledgable about

Rss and usually around twenty sets of parents with children with RSS and

also sometimes young adults.Do let me no if you need more details

Joanne- mum to Christian 8 years RSS Hertfordshire

Daughter has just been diagnosed

>

> Hi my name is Brigitte, I am from the UK and my 7 month old daughter Bobbi

has just been diagnosed with RSS, this is my first posting she is 8lb 11oz

and 22 " at present. I was wondering if any of you had any helpful

hints/tips on feeding as she very rarely really wants her milk and solids

are a no no, and this is very distressing for me, and I also would like to

hear of other RSS children (how they have progressed since infancy). Hope

to hear from you soon!

>

> Brigitte x

>

>

[Guest guest]

hey brigitte!!

welcome to this great group of supportive, caring, people!!! have

you checked out the Magic Foundations web site yet?

www.magicfoundation.org they are a great foundation and offer

support and info to their members for free. they also have a

convention every july in chicago, they were families there this year

from 29 states and 5 countries including the uk.

my son christopher is 3 1/2yrs and is 25lbs 7oz and 34 3/4 " at last

weight check on sept 20th. he is currently taking periactin (which

is an appitite stimulant) 2x a day. and beleive me it really

helps!!! he is on the milder side of the rss spectrum. he met all

his milestones on time. he attends preschool 5x a week where he

receives some slight OT. when he was an infant i had to feed him

every 2hours, then pump and give him the rest in a bottle. now i

try to get as many calories as possible inot him when he does eat.

he has assmentry of his left side, his left leg is 1cm shorter than

his right. he is possibly ADHD. other wise he is a healthy, bright

young boy.

what are some of your daughters rss charecteristics? feel free to

email me at jlcals2003@ yahoo.com (no space after @)

good luck!!

jodie c. (one of 4 jodis on the list)

(nicholas-6 1/2 nonrss, christopher-3 1/2 rss 25lbs 7oz 34 3/4 " ,

periactin, ght (genotropin on hold until oct. 18th?), ADHD

(possible), assmentry(left side 1cm), johnathon-15months nonrss)

> Hi my name is Brigitte, I am from the UK and my 7 month old

daughter Bobbi has just been diagnosed with RSS, this is my first

posting she is 8lb 11oz and 22 " at present. I was wondering if any

of you had any helpful hints/tips on feeding as she very rarely

really wants her milk and solids are a no no, and this is very

distressing for me, and I also would like to hear of other RSS

children (how they have progressed since infancy). Hope to hear

from you soon!

>

> Brigitte x

>

>

[Guest guest]

Brigett,

Welcome to the group! I'm sure you will recieve a ton of useful information

from this group. My son just turned 1 on the 25th. He started out pretty

behind but now he is ahead of children his age with physial skills, he also

recieves ot and speech once a week, and pt once a month, it is all so helpful.

He

is also on periactin 3 times a day. If you have any questions feel free to

ask!

le mom to Datreon 15lb 2oz 26in

[Guest guest]

Hi bridgitte, my name is kim and i'm an rss adult, age 26 and i live in scotland

in the uk. Have you heard about the Child growth foundation? they are a UK

charity based in london that specialise in growth disorders, and have an rss

division. If you want to email me privately i can give you the contact info and

they can put you in touch with rss parents in the UK. Also they are having a

conference in london on the 16th of this month. There is a doc at Great Ormond

Street that speialises in rss kids and he is called Dr Stanhope. I'm sure the

parents on this listserve will give you all the info you need as they are the

best group of folks and having met some of the kids they are great people to get

info on rss related experiences. i look forward to your private email.

" brigitte.foreman " wrote:

Hi my name is Brigitte, I am from the UK and my 7 month old daughter Bobbi has

just been diagnosed with RSS, this is my first posting she is 8lb 11oz and 22 "

at present. I was wondering if any of you had any helpful hints/tips on feeding

as she very rarely really wants her milk and solids are a no no, and this is

very distressing for me, and I also would like to hear of other RSS children

(how they have progressed since infancy). Hope to hear from you soon!

Brigitte x

[Guest guest]

Brigitte - welcome to the group. I have a daughter - just turned 1 in Sept. At

birth she was 4# 10.3oz - at 6 months she was 10lbs, now she weighs in at 13#

14oz. At your daughters age I was using the beech nut First Advantage baby food

(I ordered it online at www.netgrocer.com). had initial delays with motor

- she receives infant development services through our county. At 9 months she

was sitting on her own and rolling. She is now able to pull to stand, crawl on

hands and knees and take 5-6 steps on her own - then falls. Overall, she is

doing very well. I certainly hope you find all the answers you're looking for -

this is a wonderful support system. I heavily rely on this site for help with

katie. Good Luck! Jane, mom to - 13 months 26 " , and 2 boys.

[Guest guest]

Hi Brigitte, I'm . Welcome to the group! I have an 8 1/2

month old daughter. She is 12 lbs 15 oz, 24 inches, head circ 43.5

cent. She was born 18 1/2 inches and 5 lbs, 6.8 oz. She seems to

have a milder form of RSS. She is able to sit, crawl, and pull up on

furniture. She does not get enough to eat although she does eat

often, just small quantities. She still wakes up in the night every 3-

4 hours to feed. THis group has been very helpful to me when I found

out about the possibility of RSS for my daughter Autumn. I'm glad

you found us. Good luck to you!

mom of Autumn and 2 boys

> Hi my name is Brigitte, I am from the UK and my 7 month old

daughter Bobbi has just been diagnosed with RSS, this is my first

posting she is 8lb 11oz and 22 " at present. I was wondering if any

of you had any helpful hints/tips on feeding as she very rarely

really wants her milk and solids are a no no, and this is very

distressing for me, and I also would like to hear of other RSS

children (how they have progressed since infancy). Hope to hear from

you soon!

>

> Brigitte x

>

>