Summer~Thank you for always taking the time to comment and blog hug me. : )
So yesterdays appointment was a little tough. The up's and down's of JDM, in full swing. "How is Gary doing?", "We have a good days and a few down days." Yesterday was a realization day. Gary's appointment was originally scheduled for April 5th. Since his toe's decided to cross, I went ahead and moved it up. Our rheumatologist explained that she didn't have an answer unless she could see the toe's. I told her I understood. It did drive me crazy, crazy enough to look it up on internet, call the pediatrician, and went him bought him new shoes. We started out by talking about the usual stuff. Gary has tummy aches and quick visits to the potty with stomach cramping. She got on with the examination. She felt around in his toes to see if she could feel anything that would be making his toes cross. She couldn't feel or find anything. I told her his calcinosis has not changed in some area's, gone down on his arm, and had a few new ones I felt in his bottom. She looked at his nail folds and did note she noticed slight change in a few fingers. Gary's capillaries on his eye lids are very purple pink and prominent right now. That is from the JDM. She wrote orders to have xrays of his feet and ankles. Early May we will have a consult with a orthopedics to figure out the toe's. My least favorite part of the appointment was when she brought up the image of his xray from last month of his wrist. There was no fracture or break obviously, but there was calcinosis. Calcium deposits all through his fore arms ranging in different sizes. All mostly small but surprisingly quite a few. We knew he had calcinosis but I don't anyone realized just how much was actually there. I looked at the xray and said, "oh bummer" in utter disappointment. I asked if she thought we are ready to go down on prednisone like she brought up at the last appointment. It was clear the tables turned. Last month I wasn't feeling good about where we were with everything, and she was more enthusiastic. This month, I was trying to be enthusiastic and she was being cautious. She feels he still isn't good enough to go completely off steroids. He is on such a small dose (1ml) which makes me wonder if his body even recognizes it. But it must because last time we tried to taper it didn't go well. "Let's not rock the boat," she explained. Again. As we wrapped the appointment up she sort of cringed and told me to start thinking about starting a medication called pamidronate. When Gary first developed calcinosis, it wasn't even being considered because of his age and his bones are still growing. I did find a report of 3 cases where calcinosis almost completely reversed or dissolved after pamidronate infusions. Which is encouraging but 3. A whole whopping three. But I guess its something. So I cried while I made dinner last night lol. I tapped into my emergency bottle of wine, lol. Need to replace that because I will need it for tonight too lol. Until I am over it and have gone back into recovery mode.