Discussions By Condition: Brain conditions

Oro-Facial Granulomatosis & Crohn's in 3yearold

Posted In: Brain conditions 0 Replies
  • Posted By: Anonymous
  • December 20, 2007
  • 02:13 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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