Wednesday, December 9, 2015

Caving to the Fuss

Typically, I am starting off every post with Mira's daily seizure count and frequency, but for now, I have nothing to report in terms of seizures. Mira has not had a major seizure since last Friday and not since we started the fluoxetine. She has had some brief morning myoclonics, but nothing more. However, with every medication alteration over the past 10+ years, there always seems to be a negative side to every positive checked box. Mira has been very irritable over the past three days - fussy at school and fussy at home. My first reaction was to chalk it up to the fluoxetine, but I think (and hope) it is something else. I think she misses her toy. As I posted on Sunday, there is the expectation from her that once she is settled in her chair, that toy needs to arrive in front of her on a silver platter (aka her tray) within the first five minutes or there will be trouble. She loves that toy.

Having gone 5 days without the toy and having to deal with a lot of fussing and anxiety, we relented late this afternoon and gave it back to her. I was expecting her to immediately launch into a seizure, but rather unexpectedly, she played non-stop for almost 90 minutes, without so much as a twitch. Mira was balling her eyes out and the second Sarah turned on the toy, her crying came to an immediate, abrupt stop. She stared at it with her mouth open as though she couldn't believe what she was hearing. Focused and determined, she gazed at it for a solid 30 seconds before reaching out to start playing. Five days is the longest stretch she has gone without that toy since it was first introduced to her in therapy, more than 8 years ago. I hope this isn't an isolated reintroduction with it, but history has proven that the toy is a consistent seizure trigger for her, which is the reason we took a break from it in the first place. After playing for 90 minutes solid, I gave her a bath, put her back in front of it, and she continued to play for another 20 minutes, but she was visibly worn out from playing. We will see if giving it back to her will help tomorrow. For tonight, it was the toy for the win.

No comments: