Brief update

Things are going well.  It’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.  He’s advocating a pretty cautious plan: a 25% decrease in medication for one month, then we’ll check in again.  I feel conflicted about this.  On one hand I understand the caution and am happy to have the decrease.  On the other hand, why not decrease it as quickly as can be done safely?  A 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.

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.

After the last tonic-clonic we increased her diet ratio to 3.5 and their doesn’t appear to be any problems with that.  Nora is eating well and in good spirits.

Christy and I spend 1-2 hours a day planning and preparing Nora’s meals.  It’s a lot of time and effort, but we also have routines now.  We have a spreadsheet set up to quickly calculate her typical meals.  I am often struck by how well Nora eats.  Yes, 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.  But 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.  It’s all very healthy and high-quality food, especially considering the soda and fast-food many kids live on.  It’s a lot of work, but I am so thankful we have this tool for her.  I am so thankful we can feed her well while also protecting her from seizures.

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