If you happen to ask us if Emmett’s seizures have gotten better yet, we’re not going to tell you. Not because we want to be jerks or anything, we just don’t want to get everyone excited (including ourselves) if his seizures start to get better, and then start to get worse again. Because that can happen. We were told that, like his medication, there can be a “honeymoon” period where the seizures get better for a while and then over time get worse again. His seizures can also get worse before they start to get better. We have to stick with the diet for at least 3 months. Once we become more comfortable with the diet and have his ketones stabilized (they’ve gone down since we’ve been home) and have seen a difference (hopefully) for a long stretch of time, then we’ll let you all know. Whenever we started a new medication with Emmett his seizures would always get better at first. We’d be excited and tell everyone. Then a day later they would get worse again. That happened a handful of times so it’s like opening Pandora’s Box if we dare say his seizures are better. My mom knows this and when I was talking to her the other night she said, “I’m not going to ask how his seizures are.” haha!
The dietician told us it’s common for the ketones to peter out once we get home. He’s still at the 2:1 ratio so we can still move him to the 3:1 and even 4:1 if we need to. I’m not sure she will be at the hospital tomorrow so we’ll only be able to discuss what we need to do on Tuesday. We’re also going to buy a new scale because the one we have keeps giving us different readings all the time. It’s always doing wonky things and it’s making me question if that’s the reason why his ketones have dropped since he may not be getting the proper measurements of food.
He’s eating everything, though! He was never crazy about scrambled eggs. I always had to mix them in cereal or fruit but now that they’re coated with butter he’s much more interested in them. He’s been drinking his whipping cream and oil mixture with no problem too. We call it his “milkshake” hah! I’ve also put an order online through Bickford to get some flavored drops for his milkshakes. He’s allowed 15 drops a day of flavoring. So at least there’s that. The dietician went over what’s called “free foods” with us and I had to laugh. First, because they aren’t really free. The quantity is still limited and needs to be measured. It’s just a little extra he can get throughout the day. And they’re…. ready for it?
ICEBERG LETTUCE AND BLACK OLIVES! WOOO HOOOO!
That’s right folks. Emmet can have a whopping 3 black olives for a snack or 25grams of iceberg lettuce. The other “free” foods are all nuts, but he can’t exactly eat those yet. It’s like 1 nut a day, too. Pretty special.
We were also given a bag of KetoCuisine. It’s a special keto baking mix since you can’t have flour on the keto diet. Most of the recipes I’ve found though are all 3:1 or 4:1. I definitely need some more 2:1 recipes for him, but if we end up going to 3:1 it’ll be easier to find recipes. I also came across this recipe for chocolate keto cake! If all goes well and he’s still on the diet in May we can at least have a little cake for his birthday. There are some better recipes for when he’s older and is allowed a higher calorie intake.
But everything is going alright so far. We’re still easing our way through. The new routine has probably been the hardest adjustment yet. Hopefully this will work for him, and if so, I’m looking forward to making THAT blog update!
Also, it’s Remembrance Day/Veteran’s Day. A big heartfelt thank you to all those that never made it back home and to those who have served and are still serving and fighting for our freedom.