Miss Mira: Exhausting Seizure Day

Wednesday, March 11, 2015

Exhausting Seizure Day

With Mira dodging a day without having a TC, she made up for it today by having 3 of them. The first two were at school, one right before lunch and one afterward. The second one completely knocked her out. Her teacher said she was very lethargic and sleepy the rest of the day. To top it all off, she had a third one right before dinner. She recovered a little more quickly on the last siezure, but overall, she had a pretty rough day.

She was fairly irritable late this afternoon, before and after the seizure. She managed to drink about a bottle and a half, then I got her into the shower. After so many intense seizures today, her hands and feet were cold and clammy, even after the shower. In addition, she ended up in this defensive pose (see picture above) for the rest of the evening. In this pose, she brings her hands up to her sides, as though she doesn't want anyone near her and just has a blank look on her face. She ends up rigid and tense, making it difficult to get her changed and ready for bed.

After her shower, she went straight to bed and quickly fell asleep. It was an exhausting day for her, as all of the seizure activity today took its toll.

No comments:

Post a Comment

Mira's Brief Story

Mira was diagnosed with Infantile Spasms (I.S.) in September 2005. Since her diagnosis is part of larger picture of issues, including developmental delay, and hypsarrhythmia, Mira was originally diagnosed with West Syndrome.

Hypsarrhythmia represents a completely chaotic and disorganized EEG background pattern consisting of high amplitude slow waves and spikes that are asynchronous, non-rhythmic, and variable in duration. The common combination of seizures/spasms, developmental delay, and hypsarrhythmia constitutes the form of infantile epilepsy, West syndrome.

Since Mira has what is described as a catastrophic epilepsy and has multiple seizure types, she has also been diagnosed with Atypical Dravet Syndrome (SMEI), Lennox-Gastaut Syndrome (LGS), and at even Atypical Rett Syndrome. While a host of early genetic testing failed to find a typical mutation, deletion, or mosaicism in the typical genetic markers for these syndromes, it does not rule out other possible associated genetic markers that have yet to be discovered. Mira has also been tested for a series of other random genetic syndromes, through partial genome sequencing and a few individual microarrays.

In 2015, a heterozygous mutation of TPP1 was found through a genetic epilepsy panel. We do not have a definitive answer as to whether this mutation (associated with NCL - Neuronal Ceroid Lipofuscinosis) is relevant to Mira's diagnosis.

Mira has tried nearly every anti-seizure medication, finding brief 'success' with Lyrica, her 14th medication. Mira was seizure free* for about 6 months in late 2007 and into early 2008.

*(Her EEG never improved during this period, which means that she was still clinically having seizures and that the Lyrica was simply masking the symptoms. Visible seizures slowly surfaced after about 5 1/2 months of being on Lyrica.)

She received weekly OT/PT, vision, feeding, aqua, and group therapy up until 2011. She now receives PT/OT and other therapies through the school district. Mira also did hippotherapy for the summer in 2008 as well.

For Mira's longer story, please visit the January 2007 Archive. For an explanation on this blog, visit the January 2, 2017 post.

Medications Tried - in Chronological Order