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!

Amy

6 comments:

Half_theBattle said...

What a timely update - I just added Soren to my prayer list three weeks ago. I am delighted for all that progress; I'm sure he's not the only one smiling.

Jeff McFarland said...

As my daughter (10) was watching the Bronies documentary I happened to catch your brief comment about having a special needs child. I had to track you down.

I’ve only briefly read your blog, so far, but what I’ve read sounds so familiar. I have a son (14) who was born 4 months early and after a grade IV brain hemorrhage was left with multiple disabilities and intractable seizures. I know just how painful it is, as a parent, to watch your child experience a seizure. Fingers crossed that you will find some combination of meds that works for Soren. My son has a VNS that worked wonders on his seizures until he hit puberty. He’s now on Keppra, which has helped cut his seizures to approximately one per month, and does seem to help him rebound quicker.

Loved your post about the incontinence products and letters of denial. OMG. Such a pain. You finally find someone that understands what you need at the insurance company, and then next time you call them for something else they don’t exist (quit, transferred...) and nobody else seems to be able to help. So frustrating.

I hope the positive changes that you’ve seen (in February) have continued.

Best of luck to you.

- Jeff

Amy Keating Rogers said...

Hi Jeff,

I'm hoping you see this comment. I'm glad seeing me in the Bronies documentary inspired you to track me down. I'm so sorry to hear about your son's struggles, but I'm glad that the Keppra is helping him.

Sadly, Soren tends to have a seizure a day. Yesterday was a bad day and he had 3 tonic clonics. But he's been bouncing back from them well thanks to the new meds.

Yes, finding someone that understands the system is a little miracle. Something that only a fellow traveler would know.

Thanks again for leaving such a caring comment.

Best,

Amy

Jeff McFarland said...

Amy,

Yes. I received your comment.

Sorry to hear that Soren continues to have so many seizures, so frequently.

I can’t imagine having a single tonic-clonic seizure, let alone 3 in a day. I don’t know how these kids do it. It breaks my heart, every time my son, Bryce, has a seizure. Yet, in spite of all his difficulties, he is (typically) a very happy little kid. (He can also be a pill, but I try my best to focus on the positives).

I read a bit more of your blog. Different diagnoses, but similar experiences. I’ll have to ask you how you got your regional center to help with your ramp van, sometime. That and a new bath system are on our list, as Bryce is now about 75lbs and while I can still transfer him it’s getting tougher for my wife and impossible for our parents.

On a more lighthearted note, October is fast approaching. Have you ever tricked out Soren’s wheelchair Halloween? Most years have been pretty boring, but we’ve transformed Bryce’s ride into Thomas the Tank Engine, when he was younger, and more recently a Star Wars TIE Fighter (that I was pretty proud of).

All the best.

- Jeff

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