Name : Jody Parker (Mother - Jill Parker)

E-mail :

Child: 10 years old

City, state:  Portland Oregon

Area of body affected: Left arm and hand

Personal history:

Jody started carrying her left arm inward. In the beginning we thought perhaps it was due to weight gain (rapid in last several months) and took her in initially for the weight issue. I asked about her carrying her arm the way she did as it was a recent development. We then sat in the doctor's office for several hours while another doctor took a look and we had x-rays taken and blood work done. It was then that I learned she could not straighten her arm. We were not aware because her physical activities have not been limited in any way and we saw nothing abnormal. We were then referred to an orthopedic surgeon who ordered more x-rays and a bone scan. After many doctors looked at the scan, including ones from the university hospital, and ruling out anything else, it was diagnosed as melorheostosis. Jody is doing well; she handles it better than I do, I think. She understands it could very well progress and at this point there is nothing to do but wait. We have several appointments for physical therapy in case it will help increase her mobility in that arm. We have a follow up appointment in a year unless something changes and we need her seen sooner. The doctors do not think surgery is an option and I agree as I do not want to cause her more pain or affect her life any more than it will be.  If the time comes and it is necessary or pain medications are needed we will go that route. In the meantime, nothing will change. Jody will not have her activities limited and will continue with life the way she always has. I am saddened by the lack of information there is on this disorder and I am not happy to know there are others dealing with this, although I am glad I found somewhere I could write. Anyone with any information or articles on this is welcome to email me. Thank you

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