Had a bad night. Maybe two or three hours of sleep, Kalle completely awake at 3am.
While he is on the diet he has to drink a certain amount of ketogenic nutrition / day in order to make the diet work. Before he drinks the last bottle of the day (around 11pm) usually he first gets his sleeping meds. At home he falls asleep pretty soon and doesn't drink a whole bottle of nutrition. So yesterday we had to give the bottle first, then his sleeping meds. Maybe they didn't work properly because his stomach was full...he just didn't fall asleep. Took him 1 1/2 hours. And then he woke up at 3. I couldn't give him another bottle because he wasn't allowed to drink until after the big blood work in the morning. Let's say I felt pretty tired today....
Blood work went okay, although the anesthetist (best guys for finding small veins) didn't come at 8, but 1 1/2 hours later... Kalle cried terribly, but he stopped immediately when it was done. Good job! Brave Kalle :-)
Lots and lots of epileptic activity. It went on and on. He was on his back, his arms waving and shaking, turning his head, rolling his eyes. The neurologist came to talk to us and was pretty worried. He even wanted to give him Stesolid, an emergency med that you have to use if the epileptic activity won't stop. Pro: seizures stop for a while. Con: kid will sleep for the next hours, unable to drink, knocked out. And it's a heavy med, too. Just before the nurse came into our room with the med I picked Kalle up...and he stopped. Mama-mojo...
I guess the epilepsy got worse because of the sleep deprivation and the new nutrition. After a good, deep sleep in the afternoon there was less epileptic activity.
Got a little testing kit for blood sugar and ketones today. We'll have to practice how to use it. It's important to check the blood sugar 'cause it's going to be lower on the diet. But it's dangerous if it's too low. And we have to check Kalle's ketones 'cause that's the way to se if he's already 'on the diet'...it shows if his metabolism has turned around (from burning carbohydrates to burning fat > which means that the body produces ketones).
Tomorrow they'll check his heart (ECG, standard procedure if you start the diet). And tomorrow will be the first day with 100% ketocal nutrition. Kalle drinks every bottle so far....that's good. No taste-trouble.
When will we know if the diet 'works'? Meaning: ...if there are less seizures and / or Kalle is more alert and happy. Sometimes you can see improvement during a couple of days. Sometimes you have to be patient for months. Every child is different. And sometimes you don't see any change at all.
We decided it's time for something good...so the diet has to work...
Take care, Sonja