Hypercalcemia

This hypercalcemia issue has been on my mind alot lately I have been doing alot of research on it and the sad thing is there isnt really anything out there that Im really looking for and thats someone else who has dealt with this. We had IFSP meeting yesterday where we meet with all Baybes therapist together and go over last years goals and make new ones for next year. I was talking to there nurse about her situation and I just find it amazing that Baybe has full osteoperosis from having no calcium and her diet consists of saline and non calcium formula and yet she seems to be getting stronger and stronger. She hasnt had a broken bone or injury in over a year and we dont treat her fragile we treat her like a normal kid. she has made so much progress since coming off the meds, saying words and connecting with everyone. Not to mention that she moves her body all over the place and can wiggle herself across the floor. So why isnt anyone studying what is going on with her, if I was a doctor it would fascinate me. Its almost like somehow her bones are figuring out a way to grow and be strong with the calcium and that is unheard of, well atleast from what I can find. Im in the process now of finding her some new neurologists that will stay around for a while since ohsu switches docs around so much. We are going to be working on more communication techniques and even potty training. I just really wish I could find some answer to why the hypercalcemia wont go away or atleast what is causing it. I have removed almost ever element in her life that could have an effect on her and nothing worked. We are at a safe level as long as we keep saline in her diet but really how long is that gona work and how long are her organs going to be able to handle the saline everyday that they are not designed to handle. And then I worry about her kidneys, hypercalcemia sticking around too long causes kidney stones which will be terrible pain for her and then eventually her kidneys will give out and then she will be on dialasis and its just a long ugly road that I am scared to death to go down. I wish there was someone we could go see that could help us but we have already worked with the number one calcium specialist in the world and he had never seen this and his only option was that med that is dangerous and im just not willing to take that risk. Anyone out there than knows any doctors or anyone that has suffered from hypercalcemia with an unknown cause please contact me, any info helps :)))