Still Struggling

When last I posted, Soren had had some seizures, we'd given him Diastat, and increased his Zonegran.

On Tuesday, Soren returned to school. As a side note, Moira also returned on the same day, starting 2nd grade! Big girl!

The week went well for both. However, on Thursday night before bed, Soren had a brief Tonic seizure. Nothing big, but still, a seizure. Then Friday morning, right before I was going to put him on the bus, he had a Tonic-Clonic. Hopeful and determined that this would be all that he had, I put him on the bus and sent him to school. (I sent a note telling them what had happened.)

I was nervous the entire day while running my various errands, but received no call about Soren's seizures and when he arrived home, there was no note saying he had seized during the day.

But Saturday we had a BIG day planned. Aaron and I had an event to go to so we were dropping the kids off at Grandpa Denny's for the day/night. Sure enough, Soren had a seizure first thing. Then another not long after. Aaron and I decided Diastat was needed, so we dosed him up. The seizures stopped and Soren was well the rest of the day. So well that he had a great, seizure-free day at Grandpa Denny's kicking and happy. Mo had a great time in the pool!

The drag is that we had to give him Diastat last week as well. This is NOT something we like to do on a weekly basis! On Thursday I can increase his Zonegran again. Let's hope that gives us more control, 'cause we're not getting it now!

Amy

Jinxing Ourselves

So, as soon as I write how well Soren is doing, he has a seizure. It's as if he hears what we are saying and sets out to thwart us. I know this isn't actually true. It's just a coincidence.

Nonetheless, on Wednesday, Soren had a seizure while at camp. Moira and I had a bunch of things we planned to do at this time. Well, the seizure threw me for a loop (you'd think I'd be used to it by now) and our day got all messed up because we had to pick Soren up early. He had one other seizure that day.

Thursday morning, he had another seizure, so I canceled him going to camp. Since I was basically expecting the seizures that day, I wasn't as frazzled. By his third seizure, I gave him Diastat, which knocked him out and reset his brain.

Friday was actually a good day for us all. Mo, Soren, and I even went to see Hairspray (something we were supposed to do on Wednesday-seizure day).

Oh, and we increased his Zonegran Friday morning after Soren's bad day on Thursday. So far, it's not zoning him out. In fact, he had a great weekend including a fun swim in Grandpa Denny's pool today. We'll see if this increase takes us a step closer to seizure control. But I'm not going to jinx it.

Amy