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@hopeful33250

Thanks for the additional information. I'm also wondering if a DEXA scan has been done to check her bone density?

It sounds like she is being treated by a good specialist and that she has a rare problem. You can, of course, get a second opinion, if you continue to feel concerned. Has anyone in the family had a similar disorder?

Do you feel that a second opinion might put your mind at ease regarding her treatment?

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Replies to "Thanks for the additional information. I'm also wondering if a DEXA scan has been done to..."

I’m comfortable with her care. We were checked for the possibility of this being hereditary and it wasn’t. I know this is rare and it is lifelong. I’m surprised it took so long to check calcium levels. Maybe should be done on kids around 10-12 just to check. Would have saved us months of headaches.
Thanks for your interest.

Bone density was done and she was on the low side but not too.