Thursday, March 17, 2016
Another Diastat Seizure-Filled Day
Mira started off the day having multiple seizures. I went to get her out of bed this morning and she was clammy and rigid, then started having an enormous tonic-clonic. Sarah and I ended up getting her changed and dressed, then put her in her chair for about 30 minutes, which was difficult, because she was completely floppy and lethargic. We managed to get her meds in her, then put her back in her bed, then she began to have a string of equally intense tonic-clonics, which made 4 total within about a 45 minute span. Afterward, she continued to have a steady flow of arm extensions and rigid, rhythmic movements for another 30-45 minutes, so we decided to administer Diastat to interrupt the cycle again. This whole scenario is becoming increasingly common with her - we have had to give her Diastat more times in the past 6-9 months, than we have in all of 9 years before that, combined. From that standpoint alone, her seizures and episodes have become much worse over the past year. Needless to say, she has been extremely tired and lethargic all day, partially due to the Diastat, but mostly from the seizures and dystonic-like activity. The episodes always take a toll on her physically. Her hands were completely locked this morning, with her fingernails clenched into her palms so tightly, that it was digging into her skin. Her feet were like icicles and her back was drenched in sweat from where she was laying in her bed. She also must have bit her lip or tongue during one of the seizures too, since she started drooling out a small amount of blood at certain point afterward. She continued to have these movements and temperature swings throughout the day, but to a much lesser degree prior to the Diastat, but overall, she was listless all day long. We kept her at our sides most of the day and tried to keep her full of fluids, but she was reluctant to drink much, since she was so lethargic.