Ketogenic Diet: Day 3

Rayleigh had a seizure Tuesday night around 1:30a. It was only 40 seconds and not as intense as usual. Then she had a really rough 3rd day. It started off with Rayleigh still not able to drink out of a bottle or a sippy cup. Her morning medicine was awful – she is on Trileptal and Clobazam both in pill form. We crush them and put them in a syringe and suck up some water in it and squirt it into her mouth. She was fighting us like crazy taking her medicine. I'd squirt some in her mouth and she'd just have it sit in the back of her throat for what seemed like an hour! It took a while but we got her to drink every ml of her medicine in the morning. We normally give her a chaser of juice or milk (milk is no longer allowed) with her medicine but as soon as we put the bottle in her mouth after medicine she seemed to almost gag. Afraid she would spit up all of her medicine we gave up.
Shortly after medicine she had her breakfast. Day 3 breakfast was egg salad, applesauce, whipped up whipping cream. She ate every bite but still wouldn't drink water after. We let our nurse know and she let our dietitian know what was going on.
Our dietitian said that we could try giving Bug some Diet Sprite or flavored water like MIO drops or Crystal Lite packs. So we found some Diet Sprite but she wouldn't drink that either. It didn't seem to be the drink that was upsetting her, it was more like the bottle nipple itself. It was then that I noticed some little white bumps on her tongue; it looked like inflamed taste buds.

Before lunch Dr. Malik made his rounds and we let him know that she's eating fine and her ketone levels were still high like they should be but she won't drink anything. He was concerned about her vomiting the night before and now she wouldn't drink anything. He couldn't confirm if they were linked or not or if they had anything to do with the new diet. He said, “Let's see how today goes before we make changes. Hopefully she doesn't vomit anymore and we can start getting her to drink. Otherwise, let your nurse know and we can work with Jessica to alter the diet ratio.”
I think let Dr. Malik about the small bumps in her mouth and he checked her out with a flashlight and said it looks like inflamed taste buds to him also but it could also be the early signs of thrash. A yeast infection in the mouth, developed when the body produces or is introduced to too much yeast. He said that it is very uncomfortable and could the reason for her not wanting the bottle in her mouth, sucking the nipple would be painful.


Bug then took a nap and got some good rest in. She woke up and had a big lunch of butter, chicken, pears and whipped up cream. She once again ate every bite and then she had her first round of thrush medicine to get that cleared up so she could hopefully start taking the bottle again.


We took her over to the playroom for a little bit to get some energy going and get her mind off of things then back to the room for more napping. Starting the diet takes a lot out of a kid and makes her very sleepy for about a week. And on top of that she'll be more irritable for the first month.
During her nap Jessica came to steal me away to make some meals for the next day while Michael stayed with Bug. She woke up while we were making meals and came to visit us and then he took her over to the playroom again. Jessica went back over to Michael and Bug to see if he wanted her to get a volunteer to stay with Bug so he could come make meals but he said he'd stay with her because she just threw up again. Oh no! He said that it was a very small amount though and went into some happy kicking and babbling after so he took her to the room to lay down but she just wanted to stay awake and hang out.


Jessica said that if it is thrush that is causing the mouth pain and the issue with the bottle and taking fluids then that could very easily be the reason for the upset stomach also. So it was down to about 4 different possible causes: diet, thrush, dehydration, eggs. Eggs are completely new to her diet and maybe her body just can't handle it yet.


That night, to prevent dehydration the nurses started an IV with fluids. The goal was to her hydrated enough to help clear up the thrush and calm her tummy. Sometimes when you're dehydrated it's really hard to sit and drink a glass of water so we used that theory with hopes to get her back into the groove of drinking tomorrow.