Naomi today

Naomi's babbling like crazy. Well, not really babbling, she is saying something. She just says it over and over. For instance "mom mom mom mom mom mom" or my favorite"bad bad bad bad bad dad". Last night she was staying close to Isaiah and she kept saying "bub bub bub bub" and that's what she used to call him, bub or bubby. I was worried it was the increase of ketones that was helping her speech but hurting her seizures. She was falling like a tree and stiffening up and staying that way for 5-7 seconds like it was stretching her to a certain point then would let go. On Friday when I learned that her BHB was 7.37, over a full point more than it had ever been, the dietitian and I decided to lower her ratio. Not only was her BHB high, her glucose was 51, which is less than 3 mmol/l. We want it over 3. The "okay" range is something like 50-65 so she was pretty close to the bottom. She was waking up crying and wouldn't eat or drink anything. I had read about carnitine on matthewsfriends.org and it said if after the addition of carnitine the ketones trend up and the glucose down that it can make some kids too ketonic and the 1st step would be to drop ratio. I was happy when the dietitian offered that and made all changes on Friday.

Since lowering her ratio she has waken fine and is even finishing her #1 meal in decent time. Plus I don't have to follow her around at all! If she falls she just lands in a sitting position and jumps right back up and continues on with what she's doing unfazed. For some unknown reason, I swear, her seizures seem to make her want to climb. Or else the act of climbing causes a seizure! She gets up on the dining room chair and every time as soon as you get to her there's a seizure.
An odd thing I've noticed is, she can be playing in her bed for 1/2 an hour and I can observe her from a distance, she can't see me, and I see no seizure activity. But as soon I walk in her direction and she turns and focuses on me, Boom! there's a seizure! Bill says I'm a seizure magnet because there's been times I've ran to the store and he's been home with her and saw absolutely nothing. As soon as I walk in and she comes to the gate to see me, Boom! There's a seizure! We also notice them after she's been sitting for a while, say in the rifta chair (like a little high chair) at therapy. As soon as she stands and gets mobile she has one that's almost like a dizzy spell. Or when someone walks up to her. Every one who's around her any time at all has seen it and I notice they squat to her level before approaching her because they've noticed it too!! Lots of the ones she has now could pass as a dizzy spell. There's times she's had them at the store. She tends to want me to pick her up and as soon as I do she'll have one and even if I"m standing talking to someone the other person has no clue my kid just had a seizure.
I guess most people think a seizure looks like a grand mal. But there are so many different kinds!
A girl I went to school with posted on Facebook that her son woke her up in the middle of the night because he heard something and when he got to the hall he saw his brother, sound asleep with his pants around his ankles. He'd gotten up to use the bathroom and fell asleep in the hall on the way back. My first thought was at this point that would have freaked me out! How nice to not know the fear of a neurologically impaired kid! I would have been watching that boy like a hawk fearing he'd had a seizure and I missed it.
Isaiah spends a lot of time in his room drawing, watching TV, reading and playing Legos. He's perfectly healthy but it has ran through my mind "what if he had a seizure? He's up there all alone and I'd never know!".
Paranoia, I've got it bad!