Ben was extremely fatigued after school yesterday and wasn't interested in eating at all. We managed to get about 200 or so calories in him and then he went to bed. He woke this morning complaining of a sore throat and refused his breakfast. I decided to call the dietitian and the neurologist to talk to them about his blood work results and to see if this is common in kids on the diet. We are tired of seeing him so run down constantly.
His blood work looks good, but his protein level is too low. So we need to balance his ratio so that he has more protein than carbs.
The dietitian has recommended that we lower his ratio. She said that it's basically becoming a quality of life issue for him. And we agree - he's really struggling with eating.
After reading a bit tonight, I'm learning that the longer kids are on the diet their bodies become better at producing ketones. Often, kids are able to reduce the ratio and yet still produce good ketones. Considering we've been on the diet for almost 1 year already (I can't even believe it), it's time for an adjustment.
Currently, Ben is on a 3.5:1 ratio. This means that he has 3 1/2 times as much fat as protein and carbs combined. Our plan is to lower him to 3:1. This means that he will get either less fat or more protein/carb in every meal.
We also will lower his calories a tiny bit until his appetite returns more. I just made two weeks worth of pancakes the other day, but lowered the calories to 300 because he was never finishing them. It was a waste of product as well as just too much food being presented at one sitting.
It's ironic how at the beginning of the diet, we would do everything we could to make it look like he had more food to eat. We'd use tiny bowls, toothpicks instead of forks, and just spread things out to make it look like more....now we are doing the complete opposite.
I'm still overwhelmed with this diet. I don't really feel like I understand it. I need to talk to the dietitian tomorrow again because I'd like to have an exact amount of protein and carb intake for the day. It seems that he gets about 11 carbs a day, but if we need to increase his protein then I'm not sure of the exact numbers.
Lowering the ratio means that I need to recalculate every meal. I need to get the protein increased as well as the ratio and calories decreased. It feels like a daunting task at the moment, but it will be so worth it! I can't tell you how many times I've poured over the ketocalculator and wished that he was on a lower ratio. We are headed in the right direction - weaning the ratio downward. :)
We do have concerns though - we are making two changes at the same time. We are in the middle of our clonazapam wean and now changing the diet. But it really has come to a quality of life issue. We need to get his stamina up, he needs to be able to eat. We are hoping that this will help.
I just know that it's going to be fine. I really have such a peace about where we are in this journey.
A mom from the Doose support group posted this link about another boy struggling to control seizures. It was speculated that he has Doose given the information presented. Although it is comforting in ways to listen to others speak of their experiences that are similar to ours, it never gets easy to watch seizures happen and my heart grieves for those struggling. Seizures are heartwrenching, horrible, and cause great desperation to do anything to make them stop. The difference the diet is making in this little boys life is phenomenal - just like in Ben's life. We are seeing Ben return to us and with each medication wean and each tweak to the diet, we are getting him back.
This is another step in the right direction, I just know it!
Click on this link and scroll down to the bottom to watch the videos. Warning, there are seizures in the video, but the information is good and it's phenomenal to see the difference.