Monday, February 8, 2016

Awful Seizure Day

Today was a very rough day for Mira. She woke up this morning and was unusually vocal. Not in the fact that she was vocalizing as she has been doing a lot of that lately, but rather the way she was doing it - not quite happy, yet not irritable. The best way to describe it was that she just sounded 'off'' - just not herself. I got her dressed and in her chair, while she continued to make these weird sounds. I tried giving her a bottle with her meds, but she absolutely refused - she wouldn't stop clenching her teeth and when I managed to get her to take a few drinks, she just held it in her mouth for a few seconds, then deliberately spit it out the side, meds and all. I couldn't get her to take her antibiotics at all and barely managed to get her Lyrica in, which she also spit out, twice. She was flat out refusing, which is very atypical for her. Eventually I gave up and just started packing her bottles up for school, when she paused, leaned forward, and started having a full-blown tonic-clonic seizure. It seemed to go on forever, but it was only about 45 seconds, with a solid 5-10 minutes of post-ictal activity. All of this about 30 minutes before her bus was supposed to arrive. When she has a big seizure like this in the morning, which isn't very often, it always presents a challenge for us. Is this an isolated seizure? Should we send her to school? Is she going to rebound from this quickly? Do we wait it out and send her later? It's always difficult to predict where this is heading. We decided to send her to school, since she seemed to come around fairly quickly after the seizure activity subsided.

Unfortunately, she had a bunch more seizures, all when she arrived at school. The nurse called Sarah about 8:30am and said that she had at least 5 or 6 additional involved seizures. Sarah drove out to the school immediately to pick her up and she had another one as she was transferring her into the van, then a series of smaller scale ones on the way home. Sarah ended up getting her in bed and had to administer Diastat to stop the cycle. Her breathing was never an issue, so it wasn't necessarily an emergency, but definitely something that needed to be interrupted. Mira has had a lot of similar days like this over the past year, but the frequency and intensity of her seizures today were enough to not even second guess giving her Diastat. They were intense, consistent, and all within a short time period. We haven't had to resort to using it since her birthday last year (of all the days it could have been), but before that, it had been years since we had to use it. Again, we have seen an upward tick in these episodes over the past year, which is very saddening.

Mira spent a majority of her day reclined in her chair, so we could keep an eye on her. She was extremely drowsy all day from the Diastat, which was to be expected. She didn't have any additional episodes afterward and wasn't overly clammy or sweaty, which is good. She was however, very rigid at times and also floppy and lethargic at other points throughout the day. She was slowly kicking her feet before bedtime, which was encouraging to see some signs of energy, albeit at the end of the day. She managed to drink a few bottles and I was able to get her antibiotics in at dinner time. We did her back from the clinic this morning and they confirmed she does in fact have a UTI, thus starting her on the antibiotics was the right call to make last week. She is already half-way through the round now, so hopefully the antibiotics are knocking it out.

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