orofacial Granulomatosis

Hi I am enquiring about orofacial granulomatosis and the medications that are used in America or anywhere for this. My daughter was diagnosed with this when she was 2 and is now 10 yrs old, Her medications consist of prednisone, Betnovate, Advantan and at the moment she had it appear in her eye so they gave her Ibuprofen 3 times a day plus steroid based eye drops.

I have found that giving her all non processed foods helped but does not keep the actual symptoms at bay.My concern is we are in NZ and when I ask all the specialists over here how do they know how to treat this their reply is we google it!!!!.I am told it is rare for here as the possibilitie of her being the only child they know of through the national data base system.

I also highly maintain the benzoate and cinnamon free but this can be difficult sometimes. I would appreciate being able to talk to someone who has this or a family member to help me learn more on whether there are better treatments for her rather than just googling it.

Thank you for any help you are able to provide.

Anita

[Bhupinder Kaur, MD]

Hello,
Orofacial granulomatosis is a very uncommon skin disease that has been reported in nearly all age groups and races and the cause is not known. Treatment is by topical or oral steroids which your daughter is already taking.. Oral tetracycline antibiotics are sometimes helpful in reducing swelling. Topical tacrolimus alone or in combination with other treatments has also been used for mild swelling. Surgery may be required for severe permanent swelling interfering with speaking or eating.

You can discuss these treatment options with her doctor.
It is very difficult to precisely confirm a diagnosis without examination and investigations and the answer is based on the medical information provided. For exact diagnosis, you are requested to consult your doctor. I sincerely hope that helps. Take care and please do keep me posted on how you are doing.