No News

No news yet.  In some ways it's been nice not to have to make a decision yet at the same time, a little unnerving.  With the weekend coming, a long weekend at that, I was really hoping to have a plan in place just in case things go South this weekend.  Everyday that goes by without a set plan is scary since everyday her platelets are dropping.  Tomorrow will be one week post IVIG.  Lately by day 9 post infusion, her platelets are all but destroyed. 
      During the day, I try to make money to support my little family and be a mom, and by night, after the kids are in bed, I become a Scientist, Doctor, Researcher and Philospher.  I have been doing so much research into other treatments, alternative methods even.  I have discovered some interesting things though I'm not sure if any of it is significant.  With each new piece of information, I add 5 more questions to my list. 
      I found something intriguing about people who are RH Positive and have refractory/chronic ITP.  They are to be taking IVRhIg, not IVIG.  Shelbie is RH Positive and yet she has been taking the IVIG instead of the gamma globulin for RH Positive people.  Could that be why the IVIG stopped working?  The literature suggests that IVRhIg be done with IV Steroids, alternating treatments for those who stop responding to other treatments.  I am wondering why this has never been an option for us?  Everyday seems more puzzling than the one before. 
      Today was definitely less emotional than other days.  Probably because we have slipped slightly into denial and the past week is merely a foggy memory. 


Popular Posts