Wednesday, January 26, 2011

Part of Our Story--PANDAS

It's "official".  (As official as it's going to be, considering that there is no clear cut test for PANDAS.) 

The official word is that my lovely daughter has PANDAS.  The results of her bloodwork have come back from the Cunningham Study at Oklahoma State University.  Results show her Cam Kinase levels to be high....indicating that her body is fighting itself, causing inflamation in her sweet brain and causing so much of the behavior that we have seen.  Her body is having an autoimmune response to Strep (probably) exposure. 

This is not a shock.  My family is full of autoimmune issues.  Thyroid nodules for all the women.  Merry Christmas.  Asthma that ultimately cost my grandfather his life.  There you go.  Wegner's Granulomatosis that took my dad's life.  Rheumatoid Arthritis for a great uncle.  Happy Birthday.

About three months ago, I sat in my van one evening with my sweet friend who also has a PANDAS girl.  At the time, neither of us knew for sure.  I told my friend that I was hoping that it was PANDAS because then there would be an easy fix.  No more complicated menu planning, supplement shopping and googling at 3 a.m.

But here we are, having found out that it is PANDAS, and now knowing that there are also other issues, too (like Clostridia!).  There are gut issues.  Her gut is not well, I tell you, and even if I didn't know it, I could take a whiff of her breath or go into the bathroom after she's made a recent visit and tell you that her gut is not well.  So while my first reaction is to run out and get her on a good antibiotic for PANDAS, I have to sit on it for a few days and think about that.

Because what happens when an antibiotic goes in and kills all the good bacteria that is there, and there's not nearly enough in her case, is that yeast starts to grow in abundance.  To the point that it starts to cause problems.  And while we use probiotics, sometimes that seems like it is not enough.  And along with the yeast, clostridia can become more of a problem, it seems, with certain antibiotics.

So, I'm just thinking out loud here, but I was thinking I should walk into the doctor's office and ask for a good strong course of Vancomycin (which makes me shiver in my boots because it is strong and broad-spectrum).  Vancomycin can supposedly wipe out clostridia and PANDAS.  And that's what I need!  I need a magic eraser to go in and get rid of the bad, while I put in the good, right?  Right?

As with all meds, it seems, there is a drawback to the work of Vancomycin, and it is that in the majority of cases, after the clostridia is gone and the Vanco is stopped, the improvement in behavior goes away.  Now seriously, I am just a beginner at this.  I need to do a lot more research on what has happened with Vancomycin, but really? 

So I guess I'm sounding kind of sour today.  In fact, as I rethink my attitude over the past month since my girl started becoming more symptomatic, I've been kind of irritable. 

So I will end this post by breathing deeply.  And remembering... "I will give thanks unto Thee  for I am fearfully and wonderfully made."*  And so is my girl.

*Psalm 139:14

1 comment:

  1. yes she is. He created her knowing that you her mother would be able to care and love for her. He choose you to mother your sweet girl!! Trust.