Wednesday, December 21, 2011

a rough night, but good morning

Ben had 4 tonic clonic seizures between the hours of 1:00 am and 7:00 am.  After the 2nd one, we gave him another clonazapam and that gave us a 4 hour stretch of seizure relief.  He turned blue for each seizure.  I hate that.  Leeon and I are both rubbing on his back asking him to just breathe...it feels like an eternity before he gets that breath in.

I've called the doctor.  It appears to me that we are just discovering that clonazapam was probably giving us a little honeymoon period.  I've asked if we could increase his depakote since the last time we checked his levels, there was room to go up.  His diet has been the same - he's not cheated or anything.  We haven't even increased his calories like we talked about.  He is still in ketosis - his ketones are 160+.  It's so hard to figure it all out.

We took him this morning to get a lot of bloodwork done to make sure everything is going ok with the diet - checking his lipids and other things.  This was prescribed at the appointment - not related to the increased seizure activity.

He's doing great now though!  You'd never know we had the kind of night we had.

I'm hoping that the doctor will call back soon.  We are quickly approaching the weekend and Christmas.  I asked him for a plan because I don't want to just rely on information from the on call doctor since they don't know his case very well.

Thank you for praying for our little guy.

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