The next step

Audra finished her 5 day course of IV immunoglobulin treatment last night.  She tolerated all five infusions very well. 

She has had some good days and some bad days, but most days are on the line of manageable.  Even if we are on track and treating the underlying cause of all this troubling behavioral/neurological stuff she still has a long road ahead.  These current treatments aren't curative immediately, but rather over time.  That is why it is so important to have a good medication plan to manage the symptoms.  With that in mind her neurologist has made a few medication changes:

Her Clonidine patch was removed and she was started on oral clonidine twice a day instead.  This med is used not only to help her behavior but also to improve her sleep and manage her high blood pressure.

Because the Depakote has been so effective in improving her abnormal EEG her neurologist doesn't want to make any changes to it.  But she did put her on another seizure medication, Lamictal, which is known to potentiate the effect of the Depakote in helping to manage her behavior.  But Lamictal takes months to get a therapeutic (effective) level, so we are starting low and can make changes over time.

Zyprexa is a medication that is specifically helpful in managing the behaviors associated with autoimmune encephalitis.  After giving her a trial dose last week the decided to add it to her daily medication routine. 

After finally getting the approval of Audra's immunologist she was started on a 3 day course of high dose IV steroids today.  It's a super high dose!  Audra was already seeing the effects of it tonight- she was a happy, hyper, hungry girl....and it was actually kind of hysterical !! She really hasn't eaten much of anything by mouth since being admitted, {and in fact she won't even swallow all the pills she used to so we have had to start giving her meds through her G-tube} so her big appetite tonight was a welcome change. 

For now we are holding steady, waiting for the antibody testing results from her CSF to return.  We are hoping the partial panel that was sent to a local university hospital will be back tomorrow.  But the full panel that was sent to the Mayo Clinic probably won't be back for another week.  There are 1-2 other treatment options for autoimmune encephalitis but for now her neurologist wants to wait it out until the results come in. 

This past weekend I went home for a night.  I needed to be home Saturday because Maura had THREE dance recitals.  It was an all day affair.  Each year she makes so much progress and has become such a beautiful, graceful dancer.  Makes my momma-dancer heart so proud!

And it was cousin Tatum's first dance recital.

She was so adorably cute up on that big stage dancing her little heart out!

Just love that my girl is learning to dance with the world's best dance teacher...

my very dear friend who I danced with all through high school.

There was a twinge of bittersweetness to the day...

 It brought back all the memories of my other sweet girl "dancing"

up on that very same stage last year. 

Sure my teeny tiny 8 year old was up there with the 3 year olds...

but she was UP there.

Last year she was ON the stage...

but this year we would not have even been able to bring her into the building to watch.

Things are that different.

 

I need to keep my focus on the goal...

getting Audra back to the sweet, loving, smiley girl that she used to be.