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  • Shared Experiences

    Crohns + autoimmune hepatitis + primary sclerosing cholangitis in children

    Hello,



    I have a 9 yo child who has recently been diagnosed with Crohns disease, autoimmune hepatitis and primary sclerosing cholangitis overlap syndrome.  I would really like to connect to other people with a similar diagnosis.  There seems to be lots of information about Crohns, but not much for the liver autoimmune diseases. 



    Ali
  • Find a professional to answer your question

  • Ali McCallum

    Healthshare Member

    Hello Sarah,

    I've sent a connection request through to you.  Ned was diagnosed in July, currently on Prednisone and Imuran, though he hasn't achieved remission and the imuran seems to make him sick.  I struggle with getting him to eat food, and he's well below 1st percentile for weight and height.  I'd love to message you to just talk to other parents who face similar challenges.  Thanks for your reply.

    Ali

  • lolom

    Healthshare Member

    Hello, my daughter was diagnosed last year with PSC-AIH overlap and Ulcerative Colitis at the age of 15 months.  We have had many ups and downs since then, she is now nearly 22 months and still trying to get her UC under control and get her off Prednisone.  We started Imuran 6 weeks ago so hoping with fingers crossed.  Her LFT's been much improved since treatment started just the horrible UC.
    Hope both your children doing ok, would love to share and chat, as you know because it so rare support is very limited.  We are in Sydney and treated at Westmead Childrens.

    Best Wishes

    Lorna

  • Ali McCallum

    Healthshare Member

    G'day Lorna,
    I'm sorry to hear of your daughter's diagnosis and struggles. Used to be able to send a connection request to people on healthshare, though I can't find how to do that anymore…?  If no longer possible, perhaps we could connect off this site (email, skype or something else?).

    We go to westmead children's too, though live on the mid north coast so we have frequent trips to sydney.  Ned's crohns seems to be fairly settled, but his liver results are a bit all over the place.  Slowly weaning him off prednisone - makes him a very irritable and aggressive little bloke for a week or 2 after dosage changes.  His younger brother seems to cop a lot of the angst.  

    Cheerio,
    Ali









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