Pandasmom's Blog

living with PANDAS, not the furry ones…

First infusion is complete November 20, 2009

Filed under: Uncategorized — pandasmom @ 4:39 am

We completed the first infusion just about an hour ago.  If the PEX hadn’t failed us so badly I would almost be able to say that I have seen a few signs of success.  But since we had such a let down from PEX, I am super hesitant to get excited about anything.

However, there have been a few things that we have seen that can’t be discounted.  The entire time we were in Georgetown, A never spoke to any of her nurses.  The most she could do would be to look at me and ask me with her eyes to answer for her.  There was a life specialist there that she liked very much and at some point each day she would talk to her.  But it was almost always in a whisper and she would never look her in the eye. 

After A woke up from her nap, she spoke to our nurse without much prompting.  Now, she recognizes this nurse from last time and the nurse is very kind and nurturing.  But I still think there is a difference in how she acted towards her and towards the special life specialist.  We just had shift change and a brand new nurse that we have never seen before came in.  She is also very good, but she is not a mom age and has short hair.  A really doesn’t like short hair for some reason and is very vocal about it.  She tends not to like people with short hair.   But after I spoke for A and introduced A to the new nurse, A started speaking to her!  I think this is huge!  A also kept on talking with the nurse for a bit.  C was still here for a bit when the introduction was made, but I don’t think that made too much of a difference.

The other one is that A somewhat adamantly demanded markers from nurse Carrie.  Carrie went to look for some markers and came back to tell us she didn’t have any but had some fun crayons.  A looked at them and told her she didn’t want to use them.  Carrie pointed out why they were fun and A took a minute to think about it.  Then she said “It’s ok, we can deal with that”.  John and I haven’t heard A be able to “deal with” anything since pretty much the last IVIG.

This is all great and well, but our biggest challenge is behavior.  I would rather have her never speak to anyone and be able to act somewhat appropriately.  C touched one of A’s puppies and when A noticed she went into a rage.  It was a bit scary because she was hooked up to everything while this was happening and she was flomping all over the place.  I was terrified that the poke would come out and we would have to do it all over again.  I don’t think we could get her to do it again at this point without total sedation. 

I have to be patient.  We are only halfway through and I can’t expect a miracle.  My expectations are both extremely high and extremely low at the same time. 


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