Saturday, May 21, 2011

Quick Update

We went for Parker's infusion yesterday and, of course, with the week we had, the doc came in to see him.  His Actemra infusion was increased.  He was also given additional pain meds in IV and his regular push of steroids and his benedryl, chemo, zofran (for nausea), and acetaminophen.  His pain is out of control....we are changing his daily pain meds in hopes to get better control.  He is starting 2 different patches with pain meds in them.  His joints are less swollen but still in pain and warm to the touch.  Lymphs have been swelling too.  The crackling in his joints is to be expected and the doc called it crepping (I have to look that one up). 

The doc also ordered another round of double antibiotics because his H-pylori is still active.  Hopefully this next round will do the trick.  Otherwise we will be going to the gastro doc next for a scope.  She is hoping this is just a "blip" and we will see the Actemra continue to work.  If it doesn't, then we are in for weekly visits with alternating infusions of Actemra and Remicade and we just can't even go there with our thoughts right now. He has been cold and losing his hair more.  The doc said that sometimes the body reacts this way.

One of the problems with systemic JA is kids' immune systems have little to fight with...please continue to keep Parker and our family in your prayers and throughts.  Today, he woke asking to soak in the bath.  He said he does feel better since his infusion and he seems a bit more energized to me. 


  1. Well...I am glad he is feeling better since the last infusion. He seems to be somewhere in the middle with his immune system. If his body still has not been able to kick this infection it seems to me like they should admit and get him on an IV. Do they ever do a blood culture? Is his ANC above 500? I will pray he is able to get rid of this infection soon. He doesnt need anymore meds in his system....poor little dude. :o( Its just not right.
    I love you guys! Let me know if I can do anything.

  2. Poor guy. Such a fighter. Thinking of your sweet boy!!