Pandasmom's Blog

living with PANDAS, not the furry ones…

Today Show PANDAS Segment September 24, 2009

Filed under: Uncategorized — pandasmom @ 10:54 pm

The Today show did a short segment on PANDAS today.  You can view it here.  Watching this though, brings about more questions for me than answers.  Why does it seem that there are so many degrees of PANDAS?  And it seems that we got such a severe case of it.  In talking with the other PANDAS parents I have met, they say that most people wouldn’t even notice something was amiss with their child.  That is so not the case with A.  Our ped told us this is the most extreme case she knows of.  All of the specialts we have worked with have said that A’s level of anxiety is the most extreme they have ever seen in any child and that it came out of nowhere.  The first time the OT saw her, A was a “typical” child.  Within 2 sessions, A was no longer able to function in the therapy room if another child was in the vicinity also receiving therapy.  It is confusing to me that there is such a range of severity of PANDAS cases.  I also wonder what causes the severity difference?  Why did A get such a horrible case of it?

On another note, A woke up again in the middle of the night.  This time, she was only awake for 2 hours or less.  I went with her into her room and got into bed with her.  I chose to only be encouraging with her rather than let her know I was angry to be awake from 2 am – 4 am.  Luckily she was able to finally put herself back to sleep.  She is definitely tired today though. She is still doing well in preschool.  Her aide says that she is doing well socially and is doing better than most of the kids regarding social skills in preschool.  The child psychologist said that if A can recover to a point of pre-sickness or close to it, then she should be able to regain herself each time she gets sick.  To me that is a sign of hope and is something that might pull me through the next episode.

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