Discussions By Condition: Brain conditions

mum inneed

Posted In: Brain conditions 3 Replies
  • Posted By: Anonymous
  • December 20, 2007
  • 00:18 AM

I live in Brisbane - Australia (just moved up here from Sydney) and my 3 year old daughter has been diagnosed with oro-facial granulomatosis and the start of Crohn's disease at the tail of her bowel. With this information because it is such a rare condition there is not alot of information and people to talk too. I have been in touch with the crohns association in Queensland which has helped and they are sending information down to me (I'm sure will help).

But my question to you is that do you know about oro-facial granulomatosis??

Iif you could help me with any information and what to expect or i can do for her. The oro-facial granulomatis is effecting her lips which are enlarged and when they are at there worst effect her speech.

It is very heartbreaking as she has very serve constipation. Any information you can give me is greatly appreciated.

My other problem is the run around i am having with Doctors, just leaving Maddy to cope with the serve constipation. If you could recommend some Doctors or anything. I am willing to give anything ago. My local GP has been so great but she can only do so much i really need a good specialist. And I'm willing to pay or do anything for the right help.

A very desperate Mum - Nicole

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3 Replies:

  • Nicole -- my sister has had Crohn's since she was a teenager, but it is controlled with medical help and she only has mild flare ups. I will ask her who her doctor was and come back to you. We also live in Brisbane. Our Dad is now very ill with a separate condition so doing the same as you -- searching for anyone with info out there. My first time on a forum.
    Grace&Benny 3 Replies
    • December 21, 2007
    • 02:51 PM
    • 0
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  • Sorry Mum, it looks like an elimination diet might help. There could be a food trigger for the swelling, so I would insist on food allergy testing and see if that helps the child. I would hook up with a fine homeopath, since she is little, this should help her a lot.I would also get her on Dr. Rubin's formulas: http://www.makers-diet.net/storybehindbook.htm http://www.gardenoflife.com/
    Monsterlove 2,921 Replies
    • January 6, 2008
    • 08:21 AM
    • 0
    Flag this Response
  • I was thinking, if you get the Garden of Life probiotic...how will she take it??? You would have to grind it up and put it in apple sauce or something. I think we should suggest to the doctor to make a formula for children...
    Monsterlove 2,921 Replies
    • January 7, 2008
    • 00:53 AM
    • 0
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