Pandasmom's Blog

living with PANDAS, not the furry ones…

Elevated number January 13, 2010

Filed under: Uncategorized — pandasmom @ 10:59 pm

We are on the second day of A’s IVIG.  It’s interesting that when things get so bad, both John and I get swallowed by doubts and doom and gloom.  The doubts surround A’s diagnosis; is there really anything amiss?  Or is this who she truly is?  The doom and gloom make us think of future filled with very dark and unhappy times to come.  We both do this.  In November, I was completely unable to recall the benefits that IVIG had provided to A over the summer.  I was positive that she would never reap benefits from a medical procedure again.  But when we did see improvement from the November IVIG and we did schedule the treatments for the rest of 2010, I was able to remain somewhat positive that the absolute darkest times were behind us.  But this time around John had a very hard time holding on to the glimmer of hope we saw in December. 

The pockets of hope have been so small for our family.  There certainly hasn’t been enough time for anyone to start to recover or to let our guard down.  And then when the relapses come it tends to shatter us. 

When we spoke with the ped this morning she had some interesting news for us.  Each time A shows signs of a relapse and/or each time we do an IVIG we do several blood tests.  If she has the autoimmune disease she should fail some tests when she is in exacerbation mode and pass them when she is in maintenance mode.  I was quite happy this morning that one of her tests came back high.  It is the ASO titer.  Yesterday’s number was at least 20 points higher than when A is healthy.  As much as I don’t want our child to be sick, I was really happy to see some scientific proof that corroborates all of the behavior we have seen since last Friday.  There are still some other tests that we are waiting on but they had to be sent out and we won’t have the results for a while.

I am indeed happy that there is an infection that is causing all the things we see.  But at the same time, it scares me that this happened while in the middle of monthly infusions.  I know that all the other children with PANDAS are having this happen this winter too, but I just wish we could find the source and get rid of it for good. 

We are doing the IV antibiotics again and are following them with a month of Augmentin.  I hope that if there is an infection to be killed that we effectively kill it…

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