Coffin-Siris syndrome | Page 2 | Bub Hub
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  1. #11
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    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
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    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
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    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
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    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
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    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
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    Hugs to you ladies dealing with these diagnosis.
    My daughter is 3 and half now and doing very well. Xo


 

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