Quick update since yesterday’s early morning tonic-clonic seizure:
Nora is going strong. She had a great day yesterday, and is her regular self today. Her ketone level seems fine and we have not seen any waking myoclonic seizures. She has had 1 after falling asleep at nap and bedtime, but we don’t really count those because she is in the a sleep transition stage when myoclonics are most expected and normal for everyone. We do use them as a kind of signal that she is still vulnerable, but thankful that they are not breaking through when she is most robust while awake. We are hoping that this bump is much smaller than the one about 1 month ago.
We suspect that the timing of her food and fat delivery in the last week is the culprit, particularly the 2 days leading up to the tonic-clonic. She had not been eating much lunch with her babysitter for a variety of timing reasons, so she would get a big slug of calories all at once after I got home in the afternoon instead of spreading it out throughout the day. She was also eating fewer overall calories as a result, so there were fewer grams of fat required in her bedtime snack. Yesterday we were very conscious to leave a large amount of fat for her bedtime snack so that she would have enough ketones to sustain her until the morning.
A special thanks to Grandma Margie for visiting this week. It’s been great to have extra help and support here, and Nora sure loves her G’ma Gigi. She’s a delightful playmate!