During the last couple of days we saw a LOT of epileptic activity. At least we think it is epileptic activity. Shaking arms, weird eye movements, everything at once. Panic in his eyes, sometimes crying. Those 'seizures' only last 10-20 seconds, but sometimes they occur so many times during a short period of time that it feels a lot longer. Why aren't we sure if it's a 'real' seizure every time? Because sometimes it looks like an immediate reaction to a sound, a movement, a change of temperature (Kalle had 3 or 4 of those weird panic attacks during a 10 minute walk outside....it was almost freezing).
Because Kalle still has a nasal feeding tube he gets much more nutrition than he did without the tube. He now (almost) gets his perfect intake every day, according to the dietitians.The downside: his body can't control the amount he needs because we force him to take all the nutrition. If he would only get his bottle he would be the one to tell us when he has enough. I mean, we don't eat the exact same amount of food every day. Our body tells us what he needs. That's why this feeding tube is so unnatural. And why it also might be a problem: Too much food might cause obstipation. Obstipation might cause more seizures.
Next EEG will be on monday. We're extremely curious...hopefully it will help to understand what is and what isn't a real seizure.
In spite of all this trouble Kalle also surprises us. Sometimes he's so awake, he 'plays' with his favorite toy, he looks at us and touches our face. But it's hard to be happy if there's so much trouble going on. Let's hope it's just another phase Kalle has to go through. New or more medication just doesn't feel like an option right now.
The 3 months trial period of the ketogenic diet is almost over. Monday EEG, tuesday big talk with the dietitians and the neurologist. Everybody had been positive about continuing the diet, so far. But after the last week(s)...
I also read an article about the possible negative effects of one of Kalle's drugs on the diet (you can dowload the pdf here: site.matthewsfriends.org/uploads/pdf/DrugInteractions.pdf%20). It's not a medical study. It's something the folks of Matthew's Friends (huge homepage about the diet) noticed with lots of patients. So this might be something to think about.