Today we are on day 52 with ZERO seizures... that is the LONGEST we have EVER gone since Luella's first seizure on August 9, 2010. There were a couple long stretches without seizures early on but then it was mostly downhill from there. We are so happy to report this amazing milestone!
We are talking to our doctor about possibly lowering Luella's evening Depakote dose. Typically Stiripentol amplifies the effectiveness of the Depakote and most Dravet kids lower their Depakote dose once they are on Stiripentol. We hadn't done that yet and Luella's sleepiness and continued lack of appetite are prompting us to want to try this. I weighed Luella yesterday and she has lost about two pounds since starting the Stiripentol. We are hoping that cutting down the Depakote will help the sleepiness and appetite issues while still giving us GREAT seizure control.
Thank you for your continued prayers and please pray that these changes will help.
Yay!!! What a great milestone!! I will continue thoughts & prayers for this wonderful pattern to continue!
ReplyDeleteWoohoo!
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