Here's another update about Katie:
NAUSEA: Hasn't thrown up since Friday night. I hope the worst of this is behind her.
OTHER PROBLEMS: Katie's engergy, alertness and seizure activity is still fluctuating a lot (although the seizures are greatly reduced - down to 10 to 40 a day vs. 100's a day). The biggest issue has been periodic lethargy. We don't know if it is due to low ketones - they have been dipping down to 1+ (20), especially in the mornings, which may be influenced by the fact that we reduced the cream to stop the vomiting. Also, she has been having trouble with constipation. She's on Miralax daily but it took her over 5 days to have a movement Saturday after which she perked up a lot. But she hasn't had one since and has slowed back down a lot. We are communicating with our dietician about how to make adjustments.
KLONOPIN QUESTION: Dutch mom, you have been a great source of information for the Benzos. As her seizures have improved & the threat of non-convulsive status has waned, we have been holding off on the Klonopin. It was originally prescribed as an emergency adjunct but on the weeks before the diet she needed at least twice a day. Now we are down to once a day or none a day. Do you think the GABA threshold interaction may be causing some of the inconsistencies we've seen with Katie? Especially since she's been on Klonopin since late March?
Overall, though, we have been VERY ENCOURAGED by and GRATEFUL for the diet!!
Here are some of the major victories we achieved after our 1st Keto week:
BEFORE THE DIET: Katie had 100's of seizures every day (stares, head drops, etc) & was usually unaware of what was going on around her; we had to repeat everything we told her 3 to 10 times to get a response (often didn't know we were talking to her due to seizure activity); had slow/slurred mono-syllabic speech; had lost most of her personality/rarely smiled/eyes stayed "glazed over;" had incontinence episodes several times a week, sometimes didn't even have enough energy to stand or sit, was losing motor skills - couldn't write or even turn pages in a book like most 4 year-olds can
AFTER 1 WEEK: Down to 10's of seizures every day (mostly stares, not many head drops), usually aware of her surroundings, responds immediately to someone speaking to her, improved speed/annunciation/complexity of speech, her old happy personality & the spark in her eyes is returning more & more every day, no accidents at all, more energy, better motor skills.
