Tuesday, December 31, 2013

End of the Year

I can't believe the last time I updated this was in September.....I suppose I will just sum up the rest of these past months to end the year.  I always said I would not be one of those who blog drop.  Just forget about it.

Gary is doing good.  We are coming off of a pretty good flare.  Still determining what caused it.  It was enough and long enough to warrant a medicine add.  What was most important that we did not add more steroids if we didn't need too.  Last month Gary was pulling full days in first grade.  Even riding the bus.  Suddenly his attitude changed.  His self changed.  He was angry a lot.  He was not happy.  Eventually, he would head to his room and insist he lay in his bed and relax.   If we did have an errand to run, it ended in full on misery.  It was hard to be around him.   Then some hip pain, swelling of his face, super red rash all over.  He would look chemically burned especially if he became active.

Right now he is getting IVIG every two weeks.  He is getting 350mgs of steroids every two weeks.  He gets Orencia once a month.  His labs have been generally good.  We did have a few in the past three months that jumped but came back down.  It literally was like a his labs were on a bumpy road. Not enough to make changes, but enough to add that bit of information to make the recent change.  We can't call that stable.

Gary's calcium deposits are doing.  They are still there but no new ones.  The ones around his bottom have been slowly shedding out.  They bother him but don't hurt him.  During a recent X-ray, they thought he was hiding something or things in his underpants.  It was showing up on the X-ray.  It ended up being calcium deposits.  It didn't take me long to figure it out.

With this recent flare, school has become a challenge.  Gary seems to be putting a lot of pressure on himself.  He gets overwhelmed.  Academically we want to give him extra help.  By the time he gets home however, he is done.  It will be ok though.  It will work out.  We will find what works for him.

This new medicine we added is called Immuran.  We have to be careful to make sure he eats with it but he gets really nauseated.   So far so good though.  Immuran is another immune suppressor.  It is two yellow pills.  It is suppose to be a medicine that blocks the skin pathway.  So we will see.