Re: new to you

[Guest guest]

Hi ,

I am . My son Liam is 4. He has been on growth hormones for a year and

is now 32 lbs ( and has been since August of last year) and 37 3/4 inches

tall. He is finally on the charts for height, in the 5th %. He is in

preschool and will be again next year as he does not turn 5 till December.

He is starting to realize that he is smaller then the other kids. We tell

him being BIG is not about your size but about how big you are inside, and

your age. When talking to him we try not to say when you are bigger, but we

say when you are older.

R

Mom to:

Jed (1/22/93) Tic disorder, Asthma, Heart Murmur.....

Liam (12/12/00) SGA/RSS, Hypothyroid,Asthma, Epilepsy, Hearing Impaired,

Sensory Issues, Food Allergies, Heart Murmur...

Groups I own:

Toddlers with Epilepsy

Moms 30 and Beyond

HOHPreschoolers

[Guest guest]

Hi

My name is and my daugther is 5 who

was diagnosed RSS by a geneticist and then not by an

endo, Dr. Harbison, who is an expert in RSS. She is

located at Mt. Sinai in NY. She has over 100 RSS

patients. If you have not done so, contact the Magic

Foundation 1-800-3MAGIC3. They have a yearly

convention in July in Chicago.

Where do you live? I live in Northern NJ

My daughter weights 31.7 pounds and is approximately

38 3/4 inches. She will be starting school in the

fall.

B

5 and Kelli 2 3/4

--- jsskjadams wrote:

> hi i am new to this support group, yeah!!! my name

> is stephanie and i have a daughter, KYLA, who is 4

> and has RSS....she was diagnosed 2 1/2 years ago by

> a geneticist...she is 31 inches tall and weighs 24

> pounds as of last week at her 4 year check-up..we

> are in the process of getting her back on periactin

> because she has not eaten in two weeks, maybe a

> piece of bread or a bite of pizza, but not really

> 'eating' we go next week for that and maybe even

> another feeding tube.....she starts school this fall

> in pre-k and i am worried about the schools

> here.......she has started to develope breast tissue

> so i think puberty is in our near future...please

> anyone email me or however this works. ecspecially

> if you have a son-daughter around kylas age thanks

> and god bless all you mothers/fathers/grandparents

> who are raising a rss

> child!!!!!!!!!!!!!!!!!!!!!!!!!!!! stephanie

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

hi stephanie!!

my name is jodie (one of 4 jodis on this list) i have a 4yrold son with

rss. christopher is on periactin and ght. he is 36 1/2 " and 27lbs

6oz. he goes to preschool 5x a week. he receives OT 1x a week at

school. he doesnt have a feeding tube, he eats some days better than

others. where do you live? we are in nj. feel free to email me

anytime at jlcals2003@ yahoo.com (no space after @) have you checked

out the magic foundations website? www.magicfoundation.org they are a

great non-profit org for families and adults with growth disorders.

they hold a 3-day convention every july in chicago that is just

awesome!!

jodie c.

(nicholas-7 nonrss, christopher-4 rss 36 1/2 " 27lbs 6oz assmentry(left

side 1cm) periactin 5.2cc, ght genotropin .6, adhd and ocd possible,

johnathon-23months nonrss)

[Guest guest]

Hi !!

What city do you live in? I live in Watauga (which is closer to Ft.

Worth). My son Isaac is 16 mos old and has RSS..welcome to the group

I am so glad you found us!

Mimi

Mom to Isaac (16 mos RSS, Hypothyroid 15lbs 8 oz 26 " )

Sofia Elise due 9-27-05

> hi i am new to this support group, yeah!!! my name is stephanie

and i have a daughter, KYLA, who is 4 and has RSS....she was

diagnosed 2 1/2 years ago by a geneticist...she is 31 inches tall

and weighs 24 pounds as of last week at her 4 year check-up..we are

in the process of getting her back on periactin because she has not

eaten in two weeks, maybe a piece of bread or a bite of pizza, but

not really 'eating' we go next week for that and maybe even another

feeding tube.....she starts school this fall in pre-k and i am

worried about the schools here.......she has started to develope

breast tissue so i think puberty is in our near future...please

anyone email me or however this works. ecspecially if you have a son-

daughter around kylas age thanks and god bless all you

mothers/fathers/grandparents who are raising a rss

child!!!!!!!!!!!!!!!!!!!!!!!!!!!! stephanie

>

>

[Guest guest]

Hi ,

Welcome to this wonderful group. You will quickly find out how great

everyone is here. I am so glad to see that you have already found out

about MAGIC and the Convention. I hope to see you there.

I have a little boy who just turned 3 yesterday. His name is

and there are pictures posted if you would like to look at them. I did

email you, so you can read more about him there.

Once again, welcome to this group,

Jodi R.

's mommy

> hi i am new to this support group, yeah!!! my name is stephanie and i

have a daughter, KYLA, who is 4 and has RSS....she was diagnosed 2 1/2

years ago by a geneticist...she is 31 inches tall and weighs 24 pounds

as of last week at her 4 year check-up..we are in the process of

getting her back on periactin because she has not eaten in two weeks,

maybe a piece of bread or a bite of pizza, but not really 'eating' we

go next week for that and maybe even another feeding tube.....she

starts school this fall in pre-k and i am worried about the schools

here.......she has started to develope breast tissue so i think puberty

is in our near future...please anyone email me or however this works.

ecspecially if you have a son-daughter around kylas age thanks and god

bless all you mothers/fathers/grandparents who are raising a rss

child!!!!!!!!!!!!!!!!!!!!!!!!!!!! stephanie

>

>

[Guest guest]

Hi ,

My name is , my daughter vittoria is 5 she was diagnosed with rss by a

genetics in NY in DEC 2001. Tor weighs just about 30 lbs and is 38 inches tall

she has been going to pre k since she was 3 yrs old and receives pt ot and

speech. she will be going to kindergarten in the fall. We really have not done

anything with her she is a pretty good eater she has been overall healthy,we

will be going to the magic convention in july and also will be going to see Dr.

Harbison in july ay her office in NY city. We sre hoping to get more information

on RSS from her and to learn our options on different treatments for RSS. Well

thats all for now I also have a 2 yr old who is nagging at me at the moment.

Good luck this is the best place you will find.It has truley opened my mind with

the whole RSS.

mom to tori 5 rss and gina 2 non rss ny

new to you

hi i am new to this support group, yeah!!! my name is stephanie and i have a

daughter, KYLA, who is 4 and has RSS....she was diagnosed 2 1/2 years ago by a

geneticist...she is 31 inches tall and weighs 24 pounds as of last week at her 4

year check-up..we are in the process of getting her back on periactin because

she has not eaten in two weeks, maybe a piece of bread or a bite of pizza, but

not really 'eating' we go next week for that and maybe even another feeding

tube.....she starts school this fall in pre-k and i am worried about the schools

here.......she has started to develope breast tissue so i think puberty is in

our near future...please anyone email me or however this works. ecspecially if

you have a son-daughter around kylas age thanks and god bless all you

mothers/fathers/grandparents who are raising a rss

child!!!!!!!!!!!!!!!!!!!!!!!!!!!! stephanie

[Guest guest]

HI ,

I am one of the few adults here with RSS (I am too lazy to find the other

support group lol). I hope we can answer all your questions. I am fairly new to

this group but have already realized how great these people are = ) best wishes.

*leah*

jamie xxxx wrote:

Hi ,

My name is , my daughter vittoria is 5 she was diagnosed with rss by a

genetics in NY in DEC 2001. Tor weighs just about 30 lbs and is 38 inches tall

she has been going to pre k since she was 3 yrs old and receives pt ot and

speech. she will be going to kindergarten in the fall. We really have not done

anything with her she is a pretty good eater she has been overall healthy,we

will be going to the magic convention in july and also will be going to see Dr.

Harbison in july ay her office in NY city. We sre hoping to get more information

on RSS from her and to learn our options on different treatments for RSS. Well

thats all for now I also have a 2 yr old who is nagging at me at the moment.

Good luck this is the best place you will find.It has truley opened my mind with

the whole RSS.

mom to tori 5 rss and gina 2 non rss ny

new to you

hi i am new to this support group, yeah!!! my name is stephanie and i have a

daughter, KYLA, who is 4 and has RSS....she was diagnosed 2 1/2 years ago by a

geneticist...she is 31 inches tall and weighs 24 pounds as of last week at her 4

year check-up..we are in the process of getting her back on periactin because

she has not eaten in two weeks, maybe a piece of bread or a bite of pizza, but

not really 'eating' we go next week for that and maybe even another feeding

tube.....she starts school this fall in pre-k and i am worried about the schools

here.......she has started to develope breast tissue so i think puberty is in

our near future...please anyone email me or however this works. ecspecially if

you have a son-daughter around kylas age thanks and god bless all you

mothers/fathers/grandparents who are raising a rss

child!!!!!!!!!!!!!!!!!!!!!!!!!!!! stephanie