Healthshare - Australia's interactive health network

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  smiggle
  Healthshare Member

  Hi Ali
  
  
  
  My daughter is 4 and was diagnosed with ulcerative colitis 18months ago, however she has recently undergone an MRI & liver biopsy as there an strong indications that she also has PSC.  The first indication we had that something was wrong was when her first blood test came back as autoimmune hepatitis.  We also struggle to find information on the UC/PSC/AIH combination and are constantly told that her condition is chronic and difficult to treat because so far no medication combination has been succseful in bringing it into remission.  When was your child diagnosed and how is your gastro treating it?
  
  
  
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• • 

    alimac
    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.
    
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  smiggle
  Healthshare Member

  Hi Ali
  
  Sorry that I have not come back to you… I know that you were interested in the Parent's of children with IBD Support and the first one for the year is coming up. 
  
  Tuesday 13 March at 7pm - Coffee Club 1428 Logan Road, Mount Gravatt.
  
  It is during the week and may be difficult to get to.
  
  I hope Ned and your family are going through a good phase at the moment.
  
  Please let me know if you would like any more information.
  
  Take care
  Sarah
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• 

  alimac
  Healthshare Member

  G'day Sarah,
  
  Thanks so much for letting me know.  I'd love to be able to go, but unfortunately it won't work. 
  
  Ned is well at the moment.  Hoping we'll get back into a routine again now.  We've had 2 hospitalisations, including air ambulance to sydney, and a 3rd follow up trip to sydney in 5 weeks…  
  
  Ned is now on 6mercaptopurine (and prednisone still), and seems to be doing pretty well. Back at school too, which is a great distraction.
  
  How is your daughter?  
  
  Cheerio,
  Ali
  
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  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
  
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• • 

    alimac
    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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