The Official Diagnosis

We went to Children's Hospital in Oklahoma City on the morning of Friday, January 9th, 2009, with hopes that the dermatologist and pathologist were just wrong. We met with our "New Doctor" who is a pediatric rheumatologist at 10:00 a.m. We found out that they do not see patients on Friday and that we were the only ones in that Kids care zone. She said that she had reviewed the paperwork and felt that Kya needed to be seen sooner rather than later and began asking many questions.

She quickly learned that Kya does not like the word "doctor" and everytime she said it Kya told her to "Go Away!" She informed Kya that this was her office and that Kya would have to be the one to leave because she wasn't going anywhere. However, she was fabulous with her. She played games with Kya to get her to do the tests that she needed to do and when we hit our "No" phase she let her watch Shrek while she talked to us until she had cooled off. She spent two hours with us talking and evaluating the situation. Then she layed out on the line for us.

She told us that Kya did for sure have Juvenile Dermatomyositis and that she had the very aggressive kind. Which was good and bad. The facts were laid out like this:

* It is an autoimmune disease that she will live with forever and that there is no cure.

* However, she believes that it is treatable and that it could possibly go into a "remission" state.

* She has the aggressive kind that will attack hard and fast.

* However, it usually responds better and quicker. (Quicker meaning 2 to 3 years)

* The quicker you catch it the easier it is to treat. She thought we were very quick on this.

* The treatment will be very aggressive lots of strong medicines and IV treatments in a hurry.

She used to be a doctor in New York for 14 years. While she was in New York she treated 17 patients with this disease and all but 1 was very successful. That 1 had several complications and other underlying factors.

She then told us that she had spotted Kya walking across the hospital and that she could tell by the way that she walked that she was her patient. She has lost quite a bit of muscle strength and is weaker on the left side. She said that she was worse than what she had expected. She had already lined up an IV treatment for that afternoon. And had a plan of action that we needed to take.