As we reported last week, Nora had another tonic-clonic in the early morning hours of her sleep (boo). That makes 3 of these while on the diet, but the last 2 have NOT been followed by myoclonic seizures (yay).
Although seizure-freedom is the goal, we are realistic about the fact that seizures will still pop through. Each one poses the question: “What now?”
One option is to consider this the status-quo for the moment. Because the reality is that kids will continue to have breakthrough seizures until they die out for good. Some silly superstitious part of me had the idea that the end of this must be symmetrical to the beginning. She started out with 8 tonic-clonics before the myoclonics started. Now the myoclonics are done, and she will have 8 tonic-clonics before it is over. 3 down, 5 to go. Rationalization is a powerful thing.
On the other hand, we can look for more seizure control. Our first instinct is to move toward a stricter form of the diet. She has been on a 3:1 ratio (fats to carb+protein). The traditional keto diet starts out at 4:1, so we have some extra room to move if she needs even stronger ketosis. We also have not been focused on the perfect ratio for every meal during the day, opting to load a little more fat right away in the morning and before going to bed. We could try a more consistent ratio all day, as in the traditional keto diet.
This is all extra hard because the last time we saw her doctor, she was doing great and he said that he would wean her from the Depokote if she maintained seizure freedom for 2 more weeks. Her first tonic-clonic came right at that 2 week deadline, which was frustrating. But he said again that he would still consider weaning her … and then another seizure happened. After this third one, he said that his top recommendation would be to switch her to another drug. I was shocked. He told me the side effects of the drug options (one of which included myoclonics–geez), and we know the horror of weaning one drug and ramping up another. We talked through the combination of diet-drug options and all that we know about each, and he left the final choice to us about the next course of action. But still, I’m mystified by his recommendation. It plants so much doubt–in his judgment and our own. Doc, Ted and I should all be experts on Nora’s case by now. We all want these seizures to stop showing up. And it is disconcerting that we do not agree on the next course of action.
I also talked to Nora’s dietician, who did a good job at trouble-shooting the factors leading up to her seizure. Nora had built up a sleep deficit because she started giving up her nap. She was also a little constipated for a few days. She also had a little more carb than usual (very little, and barely breaking 10 g one day because we mis-recorded one food). The dietician was not too worried about it because she said that most kids have breakthrough seizures, but we can always try to do more to be consistent and help avoid them. She agreed with us that we could do more with the diet first to see if we can get better seizure control, so I feel more at peace with this decision.
We feel very strongly that continuing to tighten up Nora’s diet is the best course of action. We’ve started giving her a 3.5:1 ratio of fat to carbs+protein and being sure that her ratio is 3.5:1 after lunch and at bedtime. I am going to meet with the dietician this week and get some keto diet training and learn about their keto calculator program. Meanwhile, Ted has set up his own keto calculator spreadsheet to help more with meal planning. We will keep trying to find the easiest ways to make the diet more effective for Nora, and hopefully we will see the end of these tonic-clonics. Or maybe there will be 5 more to go. Rationalization is a powerful thing.
We spent a lot of time wondering and questioning about various courses of action. It’s impossible to know in advance what it is going to work. The important thing is that overall you’re moving forward.
I love the ketocalculator! You’ll be slicing and dicing with it in no time.