Sunday, December 29, 2013

Maggie and a PFAPA Update


Well, we had, what we HOPE is the LAST blood draw last week.  St. Louis Rhuematology sent us to Mercy's PICU to get our blood work this time since they are very, very good at drawing blood on children.  It went well, Maggie did really great.  She didn't cry or fuss or even move around.  When they were finished up with her blood work they let her pick an item from the "treasure box."  Wow!  This was a REAL treasure box, full of really nice toys.  Maggie chose a Polly Pocket with a change of clothes.  

Once we were done at Mercy we headed to Krispy Kreme for a sprinkle donut and strawberry milk. 


Now, what the next step in the PFAPA journey will be is not clear.  Her doctors have just expressed several times that "she will out grow it…someday."  In the meantime they continue to follow her.  There have been some markers on her blood work that had, what they think are, "false positives".   I've never quite followed what that will mean and unless it really is positive, then I'm not sure I actually want to know right now…  Why stress over something that probably isn't?  Know what I mean?

In the meantime Maggie's fevers have become a bit more unpredictable.   (We used to be able to track them to every 24 days).  It still comes about once a month and we have treated it with Prednisone a handful of times now.   That seems to throw off the timing on when the fever episode returns.  I had read on the internet that many Moms that treat their kids with Prednisone find the fevers return much sooner.  I haven't found this to be the case…thankfully.

I have wondered though if Maggie's sudden onset fear of weird things, like fire extinguishers, were not exacerbated by the Prednisone?  We went to Walmart one afternoon after Prednisone that morning and Maggie had major meltdown-freakout over seeing fire extinguishers in the store.  That was all new and very strange.  If anyone else has noticed this please let me know.

So, that is where Maggie is at.  She is an otherwise healthy, happy little girl so hopefully we "outgrow" it sooner rather than later.  With the fever episodes it is a blessing we homeschool, there is no way she could attend school.  She would miss so many days...

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