You may have noticed it’s been a little quiet lately. The last four weeks have been pretty long. First, M had pneumonia, which came with a couple of seizures and an ER visit, and it took us a couple of days to get control of the fever. Then two weeks later he woke up with another seizure and through the course of that day he ended up in the ER where he was diagnosed with the flu. So that took another few days of close management.
On top of that I’ve had a series of coughs and sinus infections so basically winter sucks and I’m exhausted.
But! M’s illnesses, as unpleasant as they were, gave us a chance to see some progress with the diet. As is characteristic of his particular epilepsy, his seizures to date have always been triggered by sudden spikes in fever. That is likely to change, but the pattern for now is seizures at the start of every illness as soon as the fever starts. Since illness and fever can still be a trigger for breakthrough seizures even on the keto diet, his medical team actually had to have a conversation about how they would tell whether the diet was working. They said to look for shorter or easier to control seizures if and when seizures happened.
As disappinted as we were to still see seizures while he was sick, the flu-related ones in particular gave us a lot of hope. The first one was a hemiclonic seizure (one side of his body shakes) and it unfortunately appears that it had been going on for about 20 minutes before we realized it and intervened. (He had been wearing his temperature sensor but it didn’t alarm until just after we went in to help him) In the past, these types of seizures, especially when they start in his sleep and go on for a while before we wake up and notice, don’t respond well to the rescue meds and have required a call for an ambulance. (They eventually stop around the time the ambulance arrives, but it’s really not good that they go on so long) So when we realized he was 20 mins in to a hemiclonic seizure, we quickly administered the first dose of rescue meds and braced ourselves to administer the second and call the ambulance. But then... it stopped. 90 seconds after giving him the meds. That is by far the fastest any of his convulsive seizures has responded to the Diastat.
The next night he had a cluster of myoclonic seizures (single, violent jerks of a single limb, and in a cluster they might come irregularly every 30-60 secs) as his fever spiked up just before he was due for his next dose of Motrin. Usually, if we dont stop those with Diastat once we notice them, they can go on to become a hemiclonic seizure, so we typically dose him right away. This time we gave him his Motrin a little early and put a cold washcloth on the back of his neck, and the seizure cluster self-resolved in a few minutes as his temperature came down. Again, first time we’ve ever seen that.
He had a regularly scheduled followup with his team this week, who agreed with us that these were signs the diet is starting to make a difference. We’re thrilled and incredibly hopeful.
They are moving us up to a higher 2:1 ratio, though. Their hope is that if 1.5:1 decreased seizure severity, perhaps 2:1 will be enough to tip the scales into keeping them from happening at all next time he’s sick.
So off I go to recalculate all my recipes, and we’ll be giving him syringes of oil and cream to supplement fat with all the pre-made 1.5:1 meals I’ve got in my freezer stash. And we’re keeping our fingers crossed both that this does work and that the winter illness season is over, because wow this one has been a doozy.
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