I didn't realize anyone was doing stem cell research with my condition, OI. The treatment mentioned there is a bisphosphonate called pamidronate, a pretty routine treatment for anyone without BCBS of Illinois (the ones who played for my son's treatment and then denied me five years ago because all the literature was about kids.) Bitter? Well, I just developed ON and when they x-rayed me discovered deterioration in L-5-6-7. That's where the x-ray ended. I was x-rayed throughout my whole body as part of the protocol for trying to get on it and those vertebra were still pretty good. Such is life, eh? lol

Last May our new insurance, Anthem BCBS, okayed for my husband and I to both start on Reclast, a similar treatment. We're also on high doses of Vit D and Calcium Citrate.

My story aside, I can see why parents of new babies with OI would want to try anything to help their child to live a more productive, less painful life. That's their job, and their instinct.

Allison
Off her Floridian soapbox now