A’s seizures have increased from 4-6/day before the diet to now double, around 10/day, and a lot more screaming during them. Yet bizarrely, it still feels like we’re going in the right direction. It’s early yet, and tho clearly A is not one of the lucky children to immediately become seizure-free a day or two after starting the diet, he could be one of the lucky children to become seizure free in several months. His Dr. thinks it’s likely related to the valproic wean too, and adjusting to that. Patience, patience, patience… and wine. Wine is good. And coffee.
My side of managing a ketogenic diet is going just fine – the choosing of recipes, weighing, planning, etc. to me does not seem like that much more work than planning and preparing any meal. Two things that’ve changed to try to make life easier/better for us all are: I started eating meat, after 16 years of vegetarianism (there’s a great shop nearby that sells horomone-free, grass-fed, happy-animal, local meat), and we bought a microwave, which we mostly thought of as being unnecessary and kinda silly. Both have been good choices in terms of simplifying and streamlining a busy kitchen life.
Been inspired to pull out the iPad mini more often, and model AAC. It ebbs and flows, but should be more consistent. Looking for a cheap, used iPad so we can have one for each kid, since it’s really really hard to let A use it without E interfering, and I believe E should have access to language too. Also, an iPad is bigger, and bigger buttons might help improve A’s usage of it.
I’m working on a new project to go along with this blog. It will be… interesting! It takes away from some of the writing time here but I think you will like it.