Wednesday, October 8, 2008


Sarah took the boys to Decatur over the weekend for a visit with Auntie Aura, while Mira and I enjoyed a nice long four day weekend here. As quiet as it was around the house, Mira seemed to be pretty irritable all weekend, so we managed to go on quite a few walks. I got our money's worth out of the double stroller and practically wore the tires flat in the process.

One of the things I did notice being home with Mira all day is just how many seizures she is having. I seriously lost count after 20 or 30. Most of them rarely last more than 5 seconds - where she lunges forward with arms extended for a few seconds, then comes out of it and pretty much goes back to what she was doing. It's the fact that she is having so many of them that is disconcerting.

There definitely seems to be a direct correlation between the seizure activity and her irritability. More seizures - more crying. There were a few moments over the weekend where she was just screaming and kicking like crazy and I could not calm her down, other than get her outside and go for a walk with her - just a change of scenery works wonders as a distraction for her. Her fussiness has continued into this week. The past several nights haven't been all that great too - getting up screaming and crying for 45 minutes to an hour each night.

We did take Mira off of Keppra last week, due to the fact that it wasn't doing anything and seemed to be agitating her. She had a very similar reaction with the Depakote - a poor one. So, we are essentially back in full swing on the medication merry-go-round. I spoke and emailed neurology most of last week, trying to determine what to do next. Mira's neuro agreed to try ethosuximide (brand name Zarontin - there is a generic equivalent which Mira is on) only because it has a very similar mechanism of action as Lyrica. Since Lyrica is basically the ONLY medication that has ever helped, we need to try and find similar medications with similar mechanics, but there just aren't many out there. She has been on the ethosuximide for only two days, so it's too early to tell anything.

Sarah took Eli and Mira to the dentist this morning and both did extremely well. No cavities, no problems, and no screaming!

1 comment:

JSmith5780 said...

I know poor Mira has tried nearly every drug. I don't know what it's for, but I know at least one parent on the IS group imported Stiripentol, so another option perhaps for the future. Of course, I would MUCH perfer to hear that the ethosuximide worked and she becomes SF. Here's hoping!