We are at the 1 month mark on the Keto Diet and I am happy to say that things are going well! It took a bit of adjustment for everyone. Soren was not accustomed to the new flavors of his Keto Cal vanilla formula beverages. I was not used to having to give him fluids after school (and frankly, he was a little thrown by it as well). Getting temperatures right on the drinks was tricky--not too hot or too cold. Realizing that when I prepare meals in advance and stick them in the fridge, the butter in the meal hardens up so I have to give it some "softening time" before feeding Soren.
But we're adjusting well and the results are really positive. Week 1, Soren had 38 seizures (ugh). Week 2, 19 seizures (hmmmm). Week 3, 17 seizures (is this worth it?). Week 4, 9 seizures! In fact, I didn't see any seizures for 4 days! He had two very quick ones this morning and bounced back from them really fast.
Also, Soren's energy level has increased and he's "chatting" more. Because the meals are so small, he begins insisting on them when it's meal time and wolfs them down. He wakes up bright eyed.
The only hitch we've run into is that he's gaining weight! Despite the heavy fat content, this is NOT supposed to happen because he's in ketosis, which burns the fat. And gaining weight (as long as it's not growth related) can impeded seizure control.
But the dude has a belly now! And, his PT has noticed that he's not standing as well as he was prior to the diet. It's as if his muscles can't handle this new weight gain.
So we met with the dietitian today and I'm going to try and cut 100 calories from his snack. I honestly don't know if this will fly. Soren comes home from school HUNGRY. I mix the Keto Cal with very warm water and Powerade Zero. So now, it will just be warm water and Powerade! Ugh.
But, if it works, good things will most likely come from it. First, the weight loss. Second, he could go even deeper into ketosis. And because of those two, he could get even better seizure control!
Wish us luck on this next "adjustment!"
Amy
