Orafacial granulomatosis

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Hi my son was diagnosed with orafacial granulomatosis about a year ago and I haven't really been told much about it. When he first got diagnosed he was given steroid mouth wash for 3 months and then he was put on high dose of steroid tablets and was told not to drink fizzy drinks. He is now of the steroids and Is on azathioprine tablets. He's not been checked to see if he has chrons and not been given any information about what or not to eat. I would be great full if someone could give me some more information on this as my sons lips don't seem to stay down there just flare up all the time.

I would be very great flu for some feed back

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8 Replies

  • Posted

    Hi

    He should be ok with 7 up drink but not allowed sprite.

    I take it hes on a cinnamon and benzate diet.

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  • Posted

    He hasn't been told to follow and diet just told not to drink any fizzy drinks the doctor that he is under said he doesn't know much about OFG so not really getting that much help with it
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  • Posted

    Hi

    My young lad of 7 has it sorry 8 it was his birthday yesterday

    Hes aloud 7up. He has ofg. Cinnamon and benzoate free diet

    Hes not allowed chocolate at all . Carmac bars are ok. We too are

    Learning about it to.

    Plane food chicken, potoatos .

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  • Posted

    Hi,

    If your son has been diagnosed with Orofacial Granulomatosis, it is important that he strictly follows an Elimination diet which avoids certain drinks, food stuffs and medicines containing Cinnamon, Cinnamal and Benzoates (E201-E219).

    Check the ingredients labelling on all food products to ensure that your Son doesn’t eat any which contain Cinnamon, Cinnamal and Benzoates (E201-E219).

    Cinnamal is found in some toothpastes, so be sure to check that the ingredients in his toothpaste do not include Cinnamon or Cinnamal.

    I, myself contracted Orofacial Granulomatosis last year and eventually found the cause to be Cinnamal contained in my toothpaste, (Oral-B Pro-Expert Clean Mint).

    The symptoms subsided over several weeks and the problem has not recurred.

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  • Posted

    Hi,

    Do you know about the Oral Crohns Disease facebook site. It has a lot of information and diet sheets and a

    link to a support group site with recipe ideas. I have found it really helpful.

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  • Posted

    Hi

    Thanks for all your feedback and yes I have not added the Facebook page and found it very helpful.

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  • Posted

    Hi folks- have been living with OFG for 20 odd years and the elimination diet definitely works but doesn't get rid of the cause.  I recently had my amalgam mercury fillings replaced with composite and the difference after a couple of days was palpable- the swelling in my face had reduced and my the bleeding from my gums when brushing my teeth stopped completely.  Early days yet for other issues so still following the elimination diet.  BTW- the comment above from Leo123 is comprehensive but the benzoic acid E numbers start at E210 and not E201...might give you a few options back. 

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  • Posted

    Hi. As this post is a few years old I am hoping you can give me some hope.

    My 16 year old son has recently been diagnosed and been prescribed azathriopine. It scares me and wonder how your son got on?we had heard about steriod injections but been told they would not recommend them.

    Thanks in advance

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