kimmief

I am new to this website and I love it! Thank you so much for the responses that I have gotten so far. I have a big problem and it will be long but, this is a big question that I need help on.

My daughter was diagnosed almost 2 years ago with RSD, she was 8 at the time. After call after call to Doctor's offices for help, we finally found one that was willing to help my daughter in Greenville, SC. It was a nightmare - he told us that he thought that Emily, by the way she was acting (crying and screaming if her foot was touched or she would withdraw her foot and not let him touch it at all) was sexually abused, and was borderline psychophrentic. To add to our problems he said that he had amputated limbs of adults who have RSD and had had some good outcomes with this treatment, but didn't know if we wanted to go that far right now. He also said that he felt like she was acting out because I was not pushing her enough because I had a "take care of personality" and her Father had a "take charge personality". Needless to say, I put my precious baby in the car, never to return to that Doctor again. So, from all this being said, Emily's Father has taken every word to the extreme and run with. And for those wondering, she was NEVER abused (except by that Doctor - mentally) and no she does not have any mental disease. She missed over 40 days of school for year 2002 - 2003, she has missed only about 20 this current school year. My daughter's Father is trying to get cusotdy of our daughter - one of the reasons is because she is sick and another is we are moving out of the state with my husband's job. He says that I am the one who is creating and adding to my daughter's pain and he is the only one who can help her? I am a stay at home Mom so that I can take her to doctors appointments, fly her to Minnesota and take her to PT 3 to 5 times a week. I also homeschool my daughter when she is not able to attend school (honor roll student too). He says that she needs to be in school regardless of her pain because she will be better off being with friends. By me keeping her home I am isolating her from her friends and she will not get better because, I baby her. He also tells her that she does not need to be on crutches that she needs to walk without them. When she hits her foot he tells her don't think about it, the pain will go away, (he is not the one who stays up all night with her while she screams for hours and hours at the time). He tells her that her that her pain can't be as bad as she says because just a minute ago you were laughing. When he calls he tells her over and over again - work your toes, don't think about he pain - just do it. I realize that RSD motto is "No pain, no gain" but I feel like he is being so unrealistic and just plain mean. I am so scared if for some reason Family Court, because of RSD being so unknown, will think I am the cause. I have a court date on May 19 and I need some advice to tell the Courts. She was in remission for about 6 months recently and it has just come back, when I called him to tell him she was having pain again he told me "I can't stand the fact that she will be on crutches for the rest of her life, you need to try and get her to walk without them" - I was so upset with him, I was crushed. The fact that she would be on crutches for the rest of her life means nothing to me - I love her any way that she comes. Just seeing her being able to get out of bed is a huge step for her at times. She is an innocent baby who should be thinking about what friend she will have over next, not what time her next Doctor's appointment is. She sent me a note yesterday, Thanking me for being there for her when her foot hurts and for not telling her over and over what to do. We are so much better off today than we were a year ago, but can I be too caring and not pushy enough to make her better. Scared at the outcome, wil somebody help me with your thoughts?