Hips & Spine Update

It's been awhile since I've made an update regarding Andrew's hips and spine. Andrew went to a regular dental check up on 10/17/12. All went as usual. Andrew doesn't like it, but he gets through it. His teeth are fine. Hey that's a positive!! I brought him to school afterwards. He was fine. When he got home that evening. I noticed his body was "different". Also...of note was the chest strap that keeps Andrew sitting upright was too tight at his neck leaving a very noticable red ring around his neck. I have a photo. Back to the body though... Andrew couldn't "stretch" his legs as he usually did. His legs do not stretch flat as his hamstrings are extremely tight, but his most comfortable position to that point was lying on the mat on the floor on his back or rolling to his belly with ease. Even with a dislocated hip, Andrew was able to move around on the floor by rolling. This was a positive. Andrew could move without pain. It was enjoyable to him. Andrew would also grimmace and become very vocal when his legs were made to stretch out, especially at the right hip. I kept Andrew home the next several days trying to determine was it hips, ears, legs, spine, anything??? What??? It is very hard to tell what is bothering someone when they can't tell you. I even called school to see if they saw something unusual. They said they didn't. We started 1 250mg pill of ibuprofen 2 times a day from that date, and still giving it to him. The new Andrew was becoming the norm, but we were worried enough to make a new appointment with a new bone doctor at John's Hopkins - Dr. Sponsellar. Several of my friends have taken their kids to him. Dave, Andrew & I saw Dr. Sponsellar on November 12th. Andrew had new xrays done of his hips and spine. According to this doctor Andrew's bones looked the same on these xrays as they did back in June. No evidence of anything new obviously showing on these xrays that would be bringing Andrew pain. So, that was good news. Andrew was especially "easy" at that appointment that day. Not showing any signs of distress when moved as he had been at home. The doctor advised that there would be no use for surgery at this point - once again unless this would obviously help any areas of pain. He also recommended that Andrew being placed into the stander at school would not be offering him anymore orthopedic help, but it was helpful for other body functions and change of position. He also recommended that due to the bone sticking out on Andrew's ankle - that Andrew should wear the softest shoes possible to lessen any pain to this sight. We don't want that area to become an open wound, which would bring other problems we haven't yet faced... Once again, the doctor said he would not recommend surgery at this time on any of Andrew's problem spots (hip, spine, hamstrings & feet). Surgery would not offer Andrew anything unless he could walk,stand or help with transfers. Which he does not. We were also given a prescription for the drug baclofin. Andrew would take this med by pill form 3 times per day. We've learned that this isn't an answer, but could offer some relief to his tight leg muscles. We have yet to start this med, worried about the side effects. We were told to return in 6 months unless a problem arose before then. As of now, the new Andrew is the norm. He shows irritation (worse on some days than others - no rhyme or reason) when stretching out his legs and he seems most comfortable laying in the fetal position, or sitting in his chair. School has indicated they will try to offer Andrew swimming instead of standing. That is the latest - a record for my sake...