Pandasmom's Blog

living with PANDAS, not the furry ones…

Back from PEX November 8, 2009

Filed under: Uncategorized — pandasmom @ 5:27 pm

For anyone who is a reader of our blog, I’m sorry for the absence.  A and I just returned from DC where we completed a week of PEX for her.  Unfortunately the one thing I forgot to take with me was my computer.  I had really wanted to have a detailed account of the procedure and of any changes in A throughout each day.

I will account the procedure in a bit, but wanted to post an update about our return.  A is having an incredibly hard time.  From a distance, it would appear that she is no better, or in fact, even worse than before the treatment.  She is still having severe rages, debilitating  anxiety, sensory issues, OCD and the like. 

John and I are so hopeful that this is a reaction to the trauma she has been through.  I did see 3 distinct improvements while we were at the hospital, so I know the PEX did have an effect on her.  The procedures involving IVs were beyond terrifying for her and will likely have lasting effects on A.  When she woke up from the catheter insertion she was really mad.  She screamed in anger for about 20 minutes.  It was not a typical rage but rather an expression of anger.  I am really hopeful that what we are seeing right now is a continuation of that expression.  I think that each time A got comfortable at the hospital, someone else would come in and do something scary to her.  When they would inject something into her line, her blood pressure and heart rate would sky rocket. 

It is challenging to know how to manage this.  Of course we don’t want to let her run the show with her behavior.  However, if she is expressing her anger and feelings over such a monumental week, we certainly want to let her be able to do that.  I really hope we see some sign of how to move forward soon.

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