Things are going well. \u00a0It’s been two weeks since Nora’s last tonic clonic seizure and almost two months since her last true waking myoclonic seizure (!).<\/p>\n
We got the OK from the doctor to decrease her Depakote. \u00a0He’s advocating a pretty cautious plan: a 25% decrease in medication for one month, then we’ll check in again. \u00a0I feel conflicted about this. \u00a0On one hand I understand the caution and am happy to have the decrease. \u00a0On the other hand, why not decrease it as quickly as can be done safely? \u00a0A month is a long time and other things (e.g., constipation, illness) can arise and cause more seizures, which would make it difficult to tell if it was the medication decrease or not.<\/p>\n
But in any case, clearly she is developing fine while on Depakote, and has a good quality of life, so a slow wean schedule is not a bad plan in that sense.<\/p>\n
After the last tonic-clonic we increased her diet ratio to 3.5 and their doesn’t appear to be any problems with that. \u00a0Nora is eating well and in good spirits.<\/p>\n
Christy and I spend 1-2 hours a day planning and preparing Nora’s meals. \u00a0It’s a lot of time and effort, but we also have routines now. \u00a0We have a spreadsheet set up to quickly calculate her typical meals. \u00a0I am often struck by how well Nora eats. \u00a0Yes, the diet is unbalanced in the sense it keeps Nora on a delicate knife-edge of ketosis: too much one way and she is out of ketosis, too much the other way and she will get sick from acidosis. \u00a0But just looking at a plate of her prepared food it strikes me how well she eats: avocados, fresh sweet peppers, raspberries, apples, peanut butter loaded with vitamins and supplements, hot cocoa, tea and cream, coconut oil and cream cheese on a scone, string cheese, flax crackers. \u00a0It’s all very healthy and high-quality food, especially considering the soda and fast-food many kids live on. \u00a0It’s a lot of work, but I am so thankful we have this tool for her. \u00a0I am so thankful we can feed her well while also protecting her from seizures.<\/p>\n","protected":false},"excerpt":{"rendered":"
Things are going well. \u00a0It’s been two weeks since Nora’s last tonic clonic seizure and almost two months since her last true waking myoclonic seizure (!). We got the OK from the doctor to decrease her Depakote. \u00a0He’s advocating a … Continue reading