My 13 year old grandson has this. I have been looking for other parents who have children with this but you are the first one that I have found. He was diagnosed about 2 years ago. He is on the pamindrate (spelling?) IV therapy every 3 months for 3 days. This is a very scary drug. He has what I think are side effects from the therapy but his mother, my daughter does not think that they are. He has dermagraphia which he never had before and now he has Raunards symdrome. His hands are cold and purple. He was so healthy before. Very athletic great diet little TV or video games and very loving concerned parents. He is such a beautiful boy and even modeled. He has a double row of eyelashes (like Elizabeth Taylor) which they discovered with they were checking his eyes out to try to determine where the osteoporosis was coming from, so he has beautiful eyes! He had all the tests and nothing showed up. He gets very ill during the treatments. Does you child get them? This drug is so toxic, they use it in chemo. He is doing better now not getting so sick. He had a year and a half of treatment then they tested him and his bone density was better so they are giving him another year. His bone density was I think -3.4 when he was first tested. He had six fractures at age 11 as he was in lots of sports. Years of Jujitsu. His hand broke off his arm playing football. Now, after this treatment he broke the other wrist, two fingers, elbow and arm. It is horrible. He is so sweet and does not complain. He never blames anyone when other boys tackle him and his bones break. My daughter does not like to talk about it or read about it on the web.I would like to talk to you. Alex is a great boy who gets great grades and plays the sax and piano and loves to take nature photos.