It has been a really hard year but it is all getting better. We have finally found a pain doctor that actually cares about treating the pain. Also this week we saw a research Neurosurgeon and he is referring us to a research endocrinologist. She has done a study on a new treatment with success in a male with FD of the skull. The article was published here: http://www.refdoc.fr/Detailnotice?cpsidt=23344128&traduire=en
We are very hopeful that Sean will be a candidate for this treatment as it beats having the bone drilled out with the possibility of vision loss.
I will update after we meet with the endocrinologist. I am prayerful and blessed by even finding a doctor that knows the condition well.