Saturday, June 11, 2016

Early Evening Seizures

Mira has been up and down most of this week - she has had some points where she is happy, even spontaneously laughing out loud, like she did in the store yesterday - to very low points, where she is inconsolably wailing at the top of her lungs. It has always been a roller coaster over the past nearly 11 years and Mira has been taking us for a ride on it these first two weeks of summer. We have been trying to break up the days with walks and errands, just to get her out of the house, which helps a little, but sometimes, there just isn't that much to do and Mira becomes quickly bored. We went for a walk early this afternoon, to break one her her irritable episodes, which bought a smile to her face, as long as we were moving. It is challenging to constantly be in a state of motion, but Mira does not like to sit idle sometimes. Whenever we would stop, she would get fussy within matter of a minute or so - my signal to start walking again. Summer has officially sifted into high gear with the heat, reaching 95 degrees here already, which makes it difficult to get outside to enjoy a simple walk around the neighborhood, without profusely sweating. Mira does start school next Tuesday, which will help break up the day, even if it is only for the mornings.

The last few days, Mira has been tiring out early, ending up in bed for a 'nap' before she actually goes to bed. For the third evening in a row, she has erupted into a huge tonic-clonic in her bed. She makes that horrible grunting sound (as she did this evening, right when I sat down to start this post) which sends a chill up my spine. I rushed in there to find her having a big seizure. We haven't been seeing any TCs during the day, just a lot of random startles and tension in her arms/legs, but these early evening seizures in her bed are disconcerting. Yesterday, she had a couple in a row - tonight it was just one so far, but very intense.

We have not heard anything back on the biopsy, but then again, it has only been about 4 weeks. We will probably wait another few weeks before we reach out to her neurologist. As with all of the testing Mira has endured over the years, we typically don't expect to hear anything back within a reasonable amount of time, unless they discovered something, which of course, has not happened yet. We end up following up at her next appointment to go over it.

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