Tuesday, April 17, 2012

white blood count roller coaster

I got a call from the neurologist tonight.  Ben's white blood count has dropped significantly.  It's been bouncing around on the low end for a while now, but it has taken a plunge.  We are scheduled to go back in about a week and a half for another blood draw.  If it gets any lower or doesn't show signs of improvement, we will have to wean depakote.

This, of course, brings some uneasiness. 

Depakote was not our answer when we first started.  We had to add clobazam because it wasn't working.  Then we even added clonazapam back in.  We continued to struggle to that's when we started the diet.  So we know that depakote alone has never been our answer.

But we also had the largest fall out when his depakote level dropped over the Christmas holiday.  But even after his level was stabilized we added a fourth med, felbatol to finally get the results we have now.

We will just take things as they come.  We are praying that his level will go back up so that we won't have to make any changes at this point.

And who knows?  Maybe this would be a good thing.  Maybe this wean would be uneventful and that would mean one less med in his system.

It's the uncertainty of it all, the fragility of the freedom we've found, the fear that it'll all just far apart that starts to invade my thoughts.  But Joshua 1:9 says, "Have I not commanded you?  Be strong and courageous.  Do not be terrified, do not be discouraged, for the Lord your God will be you wherever you may go."

1 comment:

  1. Praying for higher white blood count levels. Praying for peace. Praying for a lifetime of continued seizure freedom. We love you.