Luella just had her third seizure in three days. All of which required rescue meds to stop. This is not the norm for her and it has us concerned. She hasn't been able to play outside for very long without having a seizure these last three days. Even though it's not terribly hot she is just getting too overheated. Today she had a temp of 100.3 when Jim brought her in seizing at 10:45 this morning. We just got home from church and she immediately hopped on her tricycle to ride a bit. She wasn't even running around excessively. Part of Dravet syndrome includes disruptions of the autonomic nervous system which regulates body temperature and sweating. Luella has always had issues with this but it appears like we are seeing some more prominent problems these past few days. Many Dravet kids wear cooling vests to help keep them cool. We may have to look into doing that for Luella as well.
We would appreciate your prayers as we start a new week. We are going to attempt to keep things low-key for Luella for awhile. We don't like her having a seizure every day. Hopefully she can get through Wednesday and Friday this week at school without a seizure.
So sorry to hear this latest news. Hopefully it's not the start of a new trend.
ReplyDeleteWe were given a cooling vest a couple of years ago for Ben and he has never used it...we haven't really noticed heat effecting him too much. If you would like I would be happy to send it to you. Just let me know. Best wishes!