History January 2011 - March 2011

We went back beginning of January 2011 for a check on his leg and to find out what the biopsies said. His leg was healing well. biopsies were still differing. Dr Healy was as frustrated as I was about the ambiguity of diagnosis. Little Guy was referred to Dr. at the U of MN who is the bone tumor specialist there. later in January we found our way to Minneapolis and met with the Dr. In the office he took lots of information, history and such and examined Sam. He told me that he wanted to bring Sam's case to a multidisciplinary team for input before he told me what he thought. I would get a call in a week. the two leading diagnosis were Chronic Recurring Multifocal osteomylistis, CRMO and fibrous dysplasia, FD. FD has a life long implication and CRMO is usally grown out of by adulthood. Dr told me that the least likely was FD because Sam's lesions were not in the usual places for FD, he has no lesions in the ribs for example, and the lesions were on both sides of his body. FD is usually only on one. A week later Dr called and said that he felt it was a FD type of disease, although not typical. Dr recommended treatment with pamidronate, a biphosphnate drug. this class of drug is used for osteoporosis. this is given by IV over three days every three months. It would help slow down the natural breaking down of bone. Our bones are continually being remodeled, being built up and torn down. this drug will slow down the tear down process. In February we went back to Dr Healy with the info. Orthopaedics does not administer the drug so we were referred to endocrinology. There is a huge wait to get get into Dr Sheridan, first appointment was given for the end of march. About an hour after that I was called back and told that appoint was not available, could we come in tomorrow, March 2. Meanwhile Sam's headaches had stepped up a lot. He was getting headaches daily now. these would take him out. He would lay on the couch and not want to do anything. Some brought him to tears they were so bad. We saw the endo and that was mostly a information gathering session for the Dr. He took a detailed history. I am always amazed at how the details are always changing in these when I get the transcripts after the appointments. Ordered three pages of lab work and a bone age x-ray. Sam was spinning on the stool that is in every exam room. This brought on a headache. I also asked for lidocane cream before doing the blood draw. I had to get a wagon to bring Sam down to the lab with as his headache was taking him down. He had 11 vials of blood drawn and had to pee in a cup for the first time. The xray was hard to get because Sam had a hard time sitting up and keeping his head up because of the headache. We got it all done and the lidocane dream was wonderful!!! About a week after that Was Sam's MRI to follow up on his chiari with the neurosurgeon. the MRI went well. Basically there has not been much change, but NSG feels that chairi decompression surgery would help the headaches. we could do it any time and he would be willing to do it at the same time as the hardware removal. When I finally got the transcript and lab notes form the endo visit I found out 5 of the blood tests were not run and the Dr wants to add a DEXA scan (bone density). I am still trying to get hold of someone to find out about this. Of the test run only two things came back out of line. his growth hormone was borderline low. We will watch his height velocity for now. I wonder if that can vary depending on growth spurts? Something else, osteoclasts?, came back that suggests he has a slightly higher than usual bone turnover. The hardest part is waiting to figure this all out.