I haven’t posted a neuro update in a while because I don’t want to jinx the streak we’ve been on. In the epilepsy world, when it’s going good, you don’t talk about it.
The Bug went for a follow up EEG today, to get a new baseline a few months into new meds. I figured it was a good time to update.
Good news: Lennyn’s EEG has improved while she’s awake. Like a lot. Looks fantastic. She also didn’t have any seizure activity while hooked up. Misfires yes, but not an active seizure. She got cleared for Boston in June . We just need to obviously bring an ample amount of oxygen, rescue meds, etc with us.
Bad news: her eeg when she is sleeping is really messy. It’s not any worse but it’s not any better so we’re back to the tweaking meds drawing board.
Lennyn has always only seized while she was sleeping and her seizures are so freaking traumatic. I don’t know if seeing your kid convulse would be any better but having her code in the middle of the night is my biggest friggen fear. This was discouraging but we trust her team and have an astronomical amount of faith. We know we will continue to clean up those brain waves.
Next eeg will be in June, when we get home from Mass. Will update then unless something changes ❤️
As always, keep rooting and praying for our girl. #Lennynstrong