Well we went to the neurologist today. We are officially weaning off Keppra! That's the only med she's on and I'm so happy! We're to go down 100 mg on both the a.m. and p.m. dose every 1-2 weeks. She first said 2 weeks but said if we're comfortable with 1 week to go ahead. It's in our hands. If for some reason she has a bad reaction we call the office and decide where to go next. I hope it all goes well! So far we've only seen improvements each time we've taken her down a dose! She's at 400 mg twice a day now so starting tonight she's going too 300 mg.
We are upping her calories. The dietitian kind of acted like she didn't want to do anything until we see if Naomi's refusal to eat now is a fluke or stomach bug or teething but the neurologist was in the room and said to go ahead with the 50 calorie a day increase right away and I'm to call in 4-6 weeks and if I still want to go to 4:1 ratio they'll do it. Bill had already told the dietitian that he wanted a step 2. We don't want to have to wait for 3 more months to pass before we change something else.
I talked to the neurologist and told her the diet is easy, fixing the meals is no problem. The hard part is getting no response from the Keto team when we need answers. I told her other parents who've had kids on the diet are the ones I get the best answers from.
Something was said about Naomi's eggnog she drinks on the diet and the dietitian said "well as long as you're using the better than eggs that's just egg white". I wanted to ask exactly how in the hell I was supposed to know that since she'd never told me that! No, I use the regular better than eggs, that's what I've always used!
The neurologist gave me her card and underlined the number I am to call if I have any trouble getting the answers I need. Her receptionist will log in the call and contact who needs to be contacted and also notify the Dr. and Martin, the heavenly helpful clinical nurse that we used to work with. He gets back to you, he is helpful and puts me at ease!
Well that's all I can think of for now.
Just ready and anxious to start this wean!
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