Friday, January 23, 2009


Soren has continued to have the Absence/Tonic seizures. And while he still bounced back super fast as if nothing happened, they have also gotten stronger and are lasting longer.

I'm hoping against hope that this is all due to the withdrawal of Zonegran. Soren is now on 25 mgs morning and night. The night dose is being dropped on Sunday. And the last morning dose will be eliminated 2 weeks after that. In my fantasy world, once all of this drug is out of his system, the seizures will dissipate.

He has been extra chipper yesterday and this morning. Yesterday after school he was talking and talking. They had done a film shoot at school, so I wonder if he was trying to tell me about how exciting it was. Then at Mo's gymnastics, he started laughing so hard, he had Mo's class busting up as well.

Then this morning he woke with a smile. After he drank his milk he snuggled into me and listened to Aaron, Mo, and I talking about our plans. He smiled even bigger whenever Aaron or Mo were talking and buried his head even closer in to me. He does love his family.

So maybe, just maybe, his body is adjusting to the withdrawal and he's feeling better.

At least that's what I'm going to think it is!


Tuesday, January 06, 2009

New Year Update

Happy New Year to All!

Well, our New Year's Day was way less stressful than last year. As you may recall (I know I do), January 1 of 2008, Soren had looping tonic-clonics that caused us to give him not one, but two doses of Diastat.

Amazing what can change in a year. Soren now no longer has tonic-clonics and hasn't needed Diastat in over 6 months!

He is continuing to have the Absence seizures, some now involving his body tensing up. Sadly, even Moira now knows how to identify such unusual behavior. Soren has been doing this since early December, but I was the only one who really caught them. But as the tensing has been added in, they are far more obvious. This weekend, Moira saw him do this while I was out of the room. She came to me and said that Soren did something weird. But it wasn't a seizure. She described it and I told her that, in fact, it was a seizure.

I'm hoping that the more pronounced version of these seizures is a result of the weaning of the Zonegran and that they will disappear once it is fully out of his system. We'll see. If not, I still don't think the Zonegran was helping anything, since I saw one of these while he was still on the stuff. We'll bring it up with Dr. Shields at our next visit if they are still happening.

But all in all, 2009 is starting out much better for our boy. He's happy and responsive. The way he reacts when Aaron walks into the house after being at work is so wonderful. Last night he was smiling so big he practically wiggled and kicked his way off my lap. He knows his Daddy!
I wish you all a happy and HEALTHY 2009!