Sunday, November 1, 2015

8 years old......Juvenile Dermatomyositis 6 years old

I at least want to keep the faint heartbeat of my written account lets check in.

The last entry talked about trying to figure out why he was so grumpy.  2015 was real rough on him.  So many factors that make up his health, tricking us here, scaring us there, but always works out.

The most challenging thing of all this and always will be is not knowing.  The unknown.  I guess that is a factor in anyones life.   But for families that are plagued by extra circumstances, like autoimmune diseases, that unknown goes a lot deeper.   Last year, not knowing why he felt so unpleasant.  So hostile.  A few months ago the question was answered.  The question was why his blood counts had been treading down for so long.........words like malignancy were mentioned.  Inflammatory storms coming from his immune system.  Sure enough there were no indications that nothing new was going on.  So they prescribed some iron.   It made a world of difference.  He often complained of tummy pain, and his stamina was limited.  Iron has turned it around.   We did adjust a few medications.  Dropped the Orencia and added Tocimizilab......this one has made a world of difference for his calcium.  They have been way less painful.   So we decided to try........for the first time in over two years.....the tapering of prednisone.    Our doctor said we are seeing the compounding effects of being on all these medications for so long.   That motivated everybody to try!   I can't say it is going smoothly.   Labs did come up after only 4 days of tapering but, deep deep deep breath.....and we are checking labs again tomorrow.   Fingers crossed.....he started physical therapy to help him regain some general physical fitness.  He also started flag football.   And although he did need to repeat his grade, he has been going to school full time......after a full day of school, he plays with his friends after school.   Just simply amazing stuff........we work closely still with psychiatry.  Our doctor not only coaches him and helps him deal, but she coaches me as well!  We have identify syndromes that have developed during his treatment.  It has been very helpful.

We did visit the plastic surgeon last week again.   We are waiting to be scheduled to have more calcium removed.  Although he has not formed any new ones.....the existing do not go away easily.  When they try and go away, it is not complete, and leaves him with holes in his skin.   We figured a nice clean incision and the all out removal of the calcium is better than the slow, painful, agonizing way they rid of themselves naturally.

To sum it up.......not to bad!   We are in a little bit a rocky pattern with the steroid taper but I will take that over adding and changing medications anyday!!
Special occasion!  Having a early breakfast at Denny's with the family.  Big brother was headed in to get braces put on his teeth.  So we all joined him in one last meal before the discomfort of his teeth moving around set in.