Jump to content
RemedySpot.com

Re: New To RSS-Kim

Rate this topic


Guest guest

Recommended Posts

Guest guest

Hi Kim,

Welcome! As you may already have found out this is a great support group! Im

fairly new to this group also. I have only one son() who is 14mos and has

RSS as well, and any quesitions, curiosity about anything I post and someone is

always bound to post back, Its great! I've learned more with this support group

than any doctor my son has seen. We're trying to make it to the convention in

Chicago so can see Dr. Harbison (you've probably read about her on this

site), and we can learn alot more about RSS. It will be our first time if we do

make it. Anyway, cant wait to see pictures of Jasmine!

mom to 14 mos >13lbs RSS

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

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

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...