Saturday, December 27, 2008

6 Month Mark!

Soren has officially been seizure-free of Tonic-Clonic seizures for 6 months! The fact that this milestone fell right around Christmas was great and the best gift we could ever ask for.

Christmas Day with Soren was really fun. Though he really doesn't seem to get the whole present thing, he loves when we are all together. He is full of smiles and wiggles. He got lots of vibrating toys this year which he's found interesting--lots of eyebrow raises. He also got bongo drums from us and drumming music that we hope he grows to enjoy. And then he had some good snuggle time with Aaron, a present both of them like.

So here's to Soren going into the New Year tonic-clonic seizure free!


Tuesday, December 23, 2008


This is not about my absence in posting. This is about Absence (pronounced in the French "Ab-sance") seizures.

The old-fashioned term for an Absence seizure is Petit Mal (as opposed to Grand Mal).

However, for me, an Absence seizure is so petit, comparing to grand is, well, not comparable.

In an Absence seizure, the person stares off into space for any number of seconds and then returns to the scene as if nothing happened. I originally witnessed this in a neurologist's office when I was speaking with a man about Beatles music. Suddenly he stopped, paused, stared into space for a few seconds, and then came back, continuing the conversation as if nothing had happened.

Soren has been having Absence seizures recently. Now he has had these before. But compared to his Infantile Spasms or Tonic-Clonics (Grand Mal), Absence were nothing to write home about. They actually mainly happened when I was weaning him off of Zonegran the fist time.

Now I am weaning him off again. And he is having them again. Now, I would love to blame the Absence on the wean. However, I noticed the first Absence the first night of his wean. Which means it was before any weaning actually took effect. (in other words, plenty of the drug was in his body)

But since then, he's had a number of Absence seizures. They are quick and relatively painless. I mean, they are a bummer to see and freak us out. But he comes back within 2 seconds and it's as if nothing has happened.

I am hoping that, while the initial Absence were not "drug-weaning" related, that the subsequent ones will subside once the wean is finished.

We'll see. He's still a perky, happy boy who hasn't had any tonic-clonics since June (knock wood).

But I'll keep you updated.


Friday, December 12, 2008

Long Time!

Sorry for my lapse again in posting. I was doing a big, time-consuming job and fell off my blogging duties.

Soren had a great, seizure-free Thanksgiving. Now that's something to be thankful for!

Since I last wrote, Soren had a neurologist appointment. Soren has remained tonic-clonic seizure-free (to the best of our knowledge) since starting the Clobazam on June 21st. So Dr. Shields suggested that we remove one of the other drugs (Zonegran or Lamictal). Aaron and I were a little nervous about this, because why mess with success. But we decided to start weaning Zonegran, taking it really slow. So instead of dropping out one pill a week, we're dropping it out every 2 weeks. If all goes well, he'll be off Zonegran in 11 weeks.

Meanwhile, Soren toughed his way through another cold. This time he lost his voice and had a nasty cough. But he's the funniest sick kid. I kept hearing him making his sad, hoarse sound as I was working. But whenever I looked at him, he was smiling and the sound was him trying to laugh.

He's doing well with his new intensive Physical Therapy, though he hates working so hard (who doesn't?). And we had an assessment for Music Therapy which was really cool. The therapist was trying to get Soren to play peek-a-boo, which Soren has absolutely no interest in. But then he heard a piano in the next room and perked up. We went over to the piano in our room and started playing, my hands over Soren's hands. He loved it! Some smiles and giggles. Very cool.

That's it. I hope to update sooner next time!