Thursday, February 20, 2014

How's Soren?

Haven't written in a long, long time and realized I should really answer this question for inquiring minds.

How's Soren?

Well, he's actually doing really well.  We started him on a new medicine back in November and while it doesn't completely control his seizures, we've seen lots of benefits that make continuing the medicine completely worth while.  First of all, even when he does seize, he bounces back much quicker.  He can even have a whomping Tonic-Clonic in the morning and be okay by the time he's going to school.  That's impressive!

But we've also seen behavioral changes, and that's been so encouraging!

The changes we have seen are:
  • Turning to both sides.  Getting to his stomach again.  Turning on his side in bed.
  • Ab crunches, Head lifts.  Indicating he wants to get up.
  • Resting his head in his hands to sleep while sitting up.
  • Vocalizing more often and more consistently.  New sounds (GUM)
  • Improved mood.  More engaged in activity around him.
  • Little to no teeth grinding indicating less anxiety.
  • Smiles. Giggles. (many times)
  • Scooting out of his vision box.
  • Desire to stand up more.  Straightening legs when lifted.
  •  Feet tapping together indicating excitement or interest in activities.
  • Swallowing water when brushing teeth.
  • Increased eye contact.
It's been really amazing.  We're also currently trying to wean Soren off of one of his longtime meds that conflicts with this new medicine.  It's a slow process because every time we drop Soren down a 1/2 tablet, he has withdrawal seizures.  So we're seriously dropping down 1/2 a tab only one evening of the week and then don't drop it down another 1/2 tab for 3 weeks.  This gives his body time to adjust.

Soren also battled an ear infection recently which upset his applecart, but all things considered, he managed quite well.

So that's the update!  We are hopeful that once we wean the old medicine that the new medicine will be even more effective.  

And most importantly, Soren is much happier, which makes us happier!