Milestones and ratios

We made it to 7 months seizure-free in early November - an incredible milestone and the longest M had gone in his entire life without a seizure. He unfortunately broke his streak a few days later with a seizure at the start of a week-long adenovirus infection, but the seizure stopped within a few minutes of administering rescue medication and he bounced back fairly quickly.

As expected, with another breakthrough seizure, his care team recommended that we increase his ketogenic ratio again - so we're up to 3:1 now from 2.5:1.

As is common with Dravet, particularly early in life, all of M's seizures to date have been associated with illness. We've generally assumed it's because of the fevers, but once we changed to 2.5:1 we got through a few minor illnesses involving fevers without seizures. This made us assume he was on the "right" ratio for him. Illnesses can always cause breakthroughs even in epilepsy that is fairly well controlled by the keto diet, but we were hopeful that we'd found a solution (for now).

But his care team had a really interesting explanation - fevers are an immune response and yes, they increase body temperature, which Dravet patients are very susceptible to as a seizure trigger. But it can often be the immune response itself that can trigger a seizure - effectively, as you get sick, your body kicks into high gear to fight it off and a lot is going on throughout your system. One thing that can happen is a fever, but there's a lot less obvious stuff that's happening too and it's a stressor on your system. So, his team theorizes, we had him in high enough ketosis to keep the fevers from triggering anything due to body temperature changes, but the intensity of the initial immune response needs a still higher level of ketosis to keep it from triggering anything.

This passes the anecdotal evidence test for sure. Seizures have often been the *first* clue we get that M is sick, and while we have almost always noted a fever after the fact, it's definitely something at the start of illnesses that's particularly triggering for him - and it's actually kind of comforting to know now that it isn't just us missing a fever or other symptoms that we should have caught earlier. In fact, while he's often seized during temperature spikes during the course of previous illnesses, during the adenovirus he spiked to 103.8 F (yikes) even though he'd had ibuprofen an hour before (double yikes) and ended up in the ER with it, but did not have a seizure (much rejoicing!). This is easily the highest temperature he's ever had, so to have gotten through it without a seizure is pretty stunning and shows that his level of ketosis on 2.5:1 is absolutely providing protection against fevers as a trigger.

So the upshot: we're feeling good about this explanation, and we're hopeful that moving up to 3:1 will offer some of the extra protection he needs. We have an opportunity to test it right now, since he woke up with croup yesterday morning. He's miserable, and it meant a 6 AM ER visit to make sure his horrible wheezing didn't mean he was coming down with RSV or the flu - which have been landing some other Dravet kids in the hospital under intubation according to the parent/caregiver Facebook group - but no seizures yet. Fingers crossed.

It does mean new challenges in his meals - it's yet more fat, and I was already kind of at the limit of how much fat I could fit into baked goods I make for him without having them fall apart or end up a gross gooey mess. More on How We Keto These Days soon!