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Diagnosed with Polyostotic Cranio-orbital Fibrous Dysplasia. Orbital cavity, frontal, temporal effected. Help

My son (age 10) was diagnosed with Polyostotic Cranio-orbital Fibrous Dysplasia about one year ago. The bones affected are: Orbital cavity, frontal, temporal, skull base, cheek bone and sinus cavity (all on the left side). To date, he s been seen by a neurosurgeon , plastic surgeon, and an opthamalogist all of whom have agreed to take the wait and see approach. He s been having a lot of sinus drainage, sinus pain, and tooth pain lately. His last CTscan @ Scottish Rite in Atlanta was in July. I m worried that I may not have the right doctors. Perhaps I need to have him seen by an ENT? We ve been so concerned by the proptosis of his left eye and keeping his vision monitored, yet we ve not considered that the growth in his sinus cavity may be of more concern. As a parent, now I don t know what is just a normal headache or a normal sinus infection ... and what is cause for concern. I feel I m always on pins and needles. My question is: I don t know anymore what is normal allergies like ragweed, what is a common cold , or is it related to his disease.
Asked On : Thu, 30 Aug 2012
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