Things aren't great. I'm ready to give up, really! I'm having major self-punishment for voluntarily putting my girl through this!
We're just finishing day 3, and Lily can't keep anything down. She flat out REFUSES any liquid, which is so so so uncharacteristic for her, and now she's on an IV.
She's in high ketosis, and is acidotic. Her CO2 is very low (10), so they have her on an IV with sodium bicarbonate to try & raise that.
AND, despite all this, I'm still seeing seizures, so it all feels for naught. Honestly, I'm ready to have a meeting w/our neuro & dietician and tell them that unless they can give me good reason to keep going, I'm ready to pull the plug! I'd rather deal wtih some seizures each day and have Lily be happy & herself, rather than no seizures & have her be in this awful, lethargic, horrible state.
All of this is a relatively common side effect of starting the diet. I mean, we're COMPLETELY changing her metabolism which is a shock to the system itself, AND she's on topamax which can make the blood chemistry out of whack as it is, and add to the acidosis. None of this means she can't tolerate the diet and we have to stop. But it is so hard to persevere & push her through this hard time with blind belief that she'll start to feel better and will (hopefully) get some seizure control.
What a crap-sandwich Valentines Day.