Monday, September 02, 2013

A Rough Summer

I haven't written in a long time because I always want to tell you all positive news.  But the thing is, Soren has had a really rough summer with his seizures.  And his seizures have changed in nature, which seems to happen every couple years.  It's been a frustrating, exhausting time.

We've been trying various things to try and get better control and I've been waiting to see if they'd work.  We've tried:

  • Being regimented with his morning and evening medication timing
  • Moving his evening does later so that it would last all the way into the morning (Soren tends to seize upon waking)
  • Decreasing his calories on the Ketogenic Diet to make him more ketotic
  • Increasing the dosage of both medicines
All of these seemed to have some sort of effect for a short period of time, but then they would wear off and Soren would start seizing again.  

His seizure log for the summer:

June: 19 seizures
July:  39 seizures
August: 41 seizures

I turned my desk calendar to September yesterday.  Since Soren's birthday is later this month, the images for September are devoted to him.  It's collage of 6 pictures of Soren from last year.  Adorable images of him bright eyed and smiling.  And while I've been very aware that we haven't seen Soren smile or heard him laugh in a very long time, these images really drove it home.  These pictures were taken back when he was having only 3 seizures in a month.  And I was so greedy then--I wanted complete seizure control.  Now I would take 3 seizures a week if we could get it!  Unfortunately, he's been having 3 a day all too often.

What's Soren like having all these seizures?  Well, he's much more quiet.  Not his usual chatty self.  More serene.  He listens and wants to be part of the action.  He also really wants to be snuggled a lot.  It's as if he's lonely.    

Surprisingly, he bounces back from the seizures relatively quickly.  They slam him hard, he conks out, but then he rallies.

So what's next?  Well, we are continuing to try other options.  The problem with intractable seizures is that they don't respond well to medicines.  Soren is living proof of that.  But we won't give up.  We are determined to see that smile and hear that laugh again.

Amy

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