Tuesday, June 15, 2010

Update on Blondie

If you read the Rasmussen's blog you know that a few weeks ago Blondie's left leg started shaking. We had never seen anything like it, and were nervous that her seizure may be back - either through a connection left behind, or they were somehow now on the left side of her brain as happens to some of the kids. Up until that day we chose to believe that Rasmussen's was behind us, but that leg shaking (which has occurred several times now, as well as her arm) really threw me into a tailspin. It honestly took me right back to that first day of seizures, and the weight of reality kind of overwhelmed me for a bit.

Today (Tuesday) we did an MRI to find out if there actually was seizure activity going on, or if it was more likely clonus (repetitive muscle twitches). We realized over the weekend that Blondie was incredibly anxious about the whole thing despite our best effort to downplay everything. Turns out the poor kid was equating going to sleep for the MRI with how animals are "put to sleep." This is not a term we use, but she has heard it before, so the poor kid was worried about not waking up. She was, of course, also worried that she would have to have brain surgery again (much scarier for an 8 year old, than a 3 year old). In the hospital she did a fantastic job of getting the IV, and trying to remain calm. I knew she was scared to pieces (when they called her name she walked VERY slowly). Afterwards she was very tired, but wanted to eat (it was 2:30 and she hadn't eaten since 6 a.m.) so I took her to Red Robin, and then home to watch TV in bed. She took a few naps, but is generally in good spirits because it is over with.
Are seizures possible? Yes, some kids get seizures back after years of being "s-word free." Some kids have to have redo surgeries (some have undergone several redo's - although not for necessarily for Rasmussen's).

Those of you that know me, know that I tend to be a little strong-willed, so I have totally decided that this is clonus, not seizures. She is alert during the shaking, and it doesn't last long. It was unnerving to see her hooked up to machines today, and in a hospital bed, and we won't know the results for a few days, but I'm diagnosing clonus. And that's that.

1 comment:

Holly said...

i bet it is very scary!