+ Reply to Thread
Page 2 of 2 FirstFirst 12
Results 11 to 16 of 16
  1. #11
    Join Date
    Apr 2008
    Posts
    937
    Thanks
    304
    Thanked
    210
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    Thanks Tamtam. Hope your family is going ok with it all? Good to know others like yourself are going through similar so not so alone but sh!tty too, we shouldn't go through it at all. My DS was diagnosed with developmental delay, I was certain he had ASD though but no.

    Will bounce back I'm sure after a while, I'm just a mess at the moment and not coping great.

    Sorry again to hijack. Anyway thanks hun. xx

  2. #12
    Join Date
    Jun 2009
    Posts
    4,226
    Thanks
    1,628
    Thanked
    2,219
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts
    I'm not sure if this tag will work but @zooey 's little girl has Rett syndrome. She'll probably have some good links for support to help.

  3. #13
    Join Date
    Mar 2015
    Posts
    9
    Thanks
    0
    Thanked
    0
    Reviews
    0
    Zoz im so sorry. Retts is such a horrible syndrome xoxox My friends has a little girl (she must be 7 by now) with Retts. So unfair.

    We're still non the wiser. I rang the genetics last week who said they'd call me back but havent.

    Miss 8 see's Orthos and ENT next thursday in Brisbane about SMO's and more grommets. We're 3.5hrs away from Brissy so it makes for a very long day. Sigh.
    The pead has also started her on Topamax so Im a little terrified about side effects (epilim was absolutely terrible for her).
    She's at her fathers for a few days at the moment, its such a strange feeling not having her here! Not drawing up meds or prepping feeds or organizing the o2. Strange lol.

  4. #14
    Join Date
    May 2016
    Posts
    1
    Thanks
    0
    Thanked
    0
    Reviews
    0

    Default Info

    Hi, just wondering how you got on with your little one? We are just waiting on results for the testing in Japan also...hopefully end of this month we will have results. Love to hear some info and how you got on!

  5. #15
    Join Date
    Mar 2015
    Posts
    9
    Thanks
    0
    Thanked
    0
    Reviews
    0
    We got the diagnosis in March.
    Our geneticist ended up sending some bloods to America and we had the result within 3 months.
    Coffin Siris Syndrome ARID 1B.

  6. #16
    Join Date
    Sep 2011
    Posts
    7,160
    Thanks
    1,701
    Thanked
    3,395
    Reviews
    3
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 postsAmethyst Star - 5,000 posts
    Hugs to you ladies dealing with these diagnosis.
    My daughter is 3 and half now and doing very well. Xo


 

Similar Threads

  1. Klinefelter's syndrome
    By Freckles11 in forum IVF
    Replies: 36
    Last Post: 20-10-2015, 11:19
  2. 1:15 for down syndrome
    By ruby28 in forum Pregnancy Tests & Help / Support with Results
    Replies: 32
    Last Post: 03-03-2015, 14:39
  3. Nutcracker Syndrome
    By ICanDream in forum General Health
    Replies: 2
    Last Post: 28-11-2014, 17:32

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
FEATURED SUPPORTER
TPS Health Physiotherapy and PilatesTPS Health Physiotherapy and Pilates has three clinics located at Morningside, Redlands and Lutwyche. We offer pre and ...
REVIEWS
"Pigeon teats rule!"
by Alex
Pigeon PP Wide Neck reviews ›
"Wonderful natural Aussie made product!"
by Mrstwr
Baby U Goat Milk Moisturiser reviews ›
"Replaced good quality with cheap tight nappies"
by Kris
Coles Comfy Bots Nappies reviews ›