Saturday, November 1, 2008

This Past Week

We have had a pretty tumultuous time with Mira and her sleep over the past week. Frankly, things are really bad with her getting up in the middle of the night. She has been consistently getting up and staying up for hours, crying and screaming. Last night was a very bad night for her. She continues to be inconsolable during these episodes too - nothing seems to help. All of the insomnia, screaming, and terrible sleep cycles began when she started on the ethosuximide.

While Sarah and I think we have been seeing slightly less seizures with Mira over the past week, the constant screaming and crying in the middle of the night is more than we can stand. I have said this time and time again - either the medication works or it doesn't and in the case of ethosuximide, it was only partially working and the side effects for Mira were horrendous. We took her off of it today. We gave her a small dosage of melatonin this evening to help her hopefully sleep better.

We are so tired of the medication-go-round over the past few months. It is so exhausting for everyone, especially for Mira. We basically have few options left in terms of medications and are jaded by all of Mira's poor responses to everything we have tried since Lyrica. We will probably push on her neuro to try Gabapentin (which has nearly the exact mechanism of action as Lyrica) if things get worse again, but we are going to give Mira a break for a while. She has to be exhausted.

On a positive note, Halloween turned out to be picture perfect for all of the kids. Great weather and great costumes. Mira was a monkey, Jonah was a banana, and Eli was a Star Wars Jedi. Sarah rigged up Mira's switch on her Kid Cart tray so that when she smacked it, it said 'trick or treat'. Worked like a charm!





2 comments:

Susie Dyer said...

Hi Marc and Sarah. It's Susie. Hadn't read the blogsite for several months, so I'm sorry to read about Mira struggling with fussy nights recently. I wondered if you have tried a vibration pad/chair to help her calm?
I have a family who's 3 year old has a sleep disorder so they keep a tv in his room and a mattress on the floor for his active times (which is usually every night between 1am to 5am) Backyardigans is his favorite show.
If you all ever need a break, remember I'm only 10 blocks south. I mean it!!!

Reagan Leigh said...

I want one of those recordable switch toys for Reagan. That's so neat!