So far, so good - (monostotic fd of the left maxilla)

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This was diagnosed by accident when trying to see why his sinus infection was not clearing up back in 2012.  He has not had pain.  So far, the nasal passages are still patent, but he's not had a CT/xray since it was first discovered. A bone biopsy at the University of Iowa confirmed FD in 2012.

Growth is monitored by just keeping an eye on vision as it may press upon the optic nerve, but no changes have been noticed yet. Also assessing pain and teeth is done regularly (by me, his mom) -- but so far, it's been fine. We have fingers crossed that this will not impact him. Understanding it grows a bit more at puberty, he's probably going to be a late bloomer (like his parents)...so over the next few years we'll just keep our fingers crossed that growth will be minimal.  We like to remain informed about FD.

CCA kids (ccakids.com) was useful with providing some information about FD and, most importantly, real contacts that we were able to reach out to and get more information. I'm very thankful for having found CCAkids early on when the diagnosis was made...it was such a help for our worried minds. For all those that I contacted via email (thanks to ccakids for providing), I was so thankful for replies. It was more help than anyone could imagine, so having this map available so folks can contact someone may be helpful too.