Sorry for the terrible delay in this update. I think I kept waiting for things to settle down with the diet and Soren's seizures, but since they don't seem to be, I better do an update on the current state of things!
Soren is doing fine on the diet, but his seizures have increased compared to that wonderful 2 weeks without any activity. He's having 1-2 a day, ranging from very mild to big whompers. Still, it's less than he was having prior to the diet, so that is good. And he seems to recover quicker than before, which is also good.
And while we don't have the seizure control we'd been hoping for, Soren continues to be much more happy and alert. He's making lots of interesting noises, really making use of his voice. We get more little smiles and he is taking fewer cat naps. So we still feel that the benefits of the diet are outweighing the inconvenience.
I think the trickiest factor in full seizure control is making sure Soren eats and drinks every bit of the diet. There are days where he'll eat just fine, but then he won't drink the cream at the end of his meal. Without drinking this, he isn't getting a fully balanced Ketogenic meal. And without this, seizures are more likely to occur (which is what we are witnessing).
However, there are two ways to get a fully balanced keto meal into him. Through the KetoCal shakes and through a special Egg Nog recipe (heavy cream, egg beaters, and vanilla). Whether he drinks one drop or the whole bottle, eat sip is Ketogenically balanced. So, since Soren is on Winter Break from school, I've decided to try an experiment. I'm going to put Soren on an all-liquid, fully balanced Keto Diet to see if we get better seizure control.
The only hitch I can see with this is that Soren will get bored with these two meals of Keto shakes and Egg Nog. The good thing about the shakes is that I mix them with Powerade Zero, which has many flavors for variety. So we'll see if Soren is hip to this and if it decreases his seizures.
I will report the findings of this latest experiment as soon as I have them!
Amy
