Naomi and the diet

When Naomi first started the diet she was gaining weight like crazy! Ended up she also gained 3/4 in. So it all balanced out. I had her weighed every week for the first 4 months. After our last meeting with the Keto team the dietitian said she didn't need to be weighed so often anymore and we also didn't' have to check ketones daily. Well the ketone thing is hard to give up! You just kind of want to know what's going on! When I asked how often should I get her weight checked, the dietitian just kind of wobbled her head side to side like "well......" and never gave me a firm answer. I said "every other week? Once a month?" she wouldn't commit. So I had decided every other week would be good, then Naomi got sick and I thought to heck with it and haven't been to get her weighed in over a month. I'm the kind of person that would like a firm answer. If the dietitian had said every 3 weeks, I'd have been at the Dr's office firmly every 3 weeks!
Anyway, I took her to get her weight checked on Monday and she was 14.3 KG which is down from 14.8 KG last month. So she's lost a little more than 1/2 a pound,
Here's an email I sent the dietitian (this was before I'd had her weighed):

"I thought I'd give you a little update and ask some questions.
Naomi's seizures are still lighter and fewer. Her ketones have been staying high, mostly 80-160 even though she's had 2 colds in the last month.
Do we just ride it out and wait and see how she is in April? (haven't got that appt set up yet)
or at what point do we see if a raise in ratio or something helps or do we even do that.
Last appt with Tuxhorn she let me take Naomi's meds from 600mg 2X day to 500mg 2X and it's made no difference, maybe some improvement, but she never got worse or had a bad day.
We've had some days where she never had a cluster and maybe we only saw 15-20 myoclonic jerks all day so that's a great improvement!
She does seems to still have a day or every so often where it seems like her teeth are bothering her and she'll have a 20 minutes cluster. They are few and far between though. They are usually followed by a few days of more seizure activity.
I've only had her weight checked once since we were last there and it was about the same and I don't think she's gained any weight. With her being sick there were a few days she didn't eat all her meals but I tried to make sure she got all her cream and at least some carbs so she wouldn't get way to much ketosis. Everything stayed pretty steady though. She's getting where she's pretty satisfied with her meals and doesn't always want to finish all of them."

this is her reply

" I am looking into your appointment in April and will try to let you know tomorrow."
Does that answer any of my questions? Besides someone else makes the appts. I was just letting her know I didn't know when we'd be coming. I have already contacted the person who sets up the appts! The appt. books are closed because the Neuro is out until late April.
THIS is the most frustrating part of the diet! To see your daughter get sick, have higher ketone readings while sick and see a huge improvement in seizures during that time, then when she's better and extremely active, the seizures come back like before! To feel like she's having unnecessary seizures because things aren't being tweaked is so hard.
I've emailed the dietitian to let her know about the weight loss and the fact that if Naomi's very active her seizures are worse. If I could get her to sit around all day she'd be fine. Anyone know how to get a toddler to do that???? Without duct tape that is!
To be fair to the dietitian, she's the only one that does the diet. She is off on Wednesdays. On Thursdays she's at a different location but still working for the clinic. So that leaves Monday and Tuesday for her to get back to me and that's also the days they admit new patients to start the diet. So Fridays are the only day I see her having open. But at some point during the week she must also meet with other families who have come back to the clinic for follow up. There are 12 pediatric neurologist at the clinic and if even 1/2 of them put kids on the diet can you imagine what that patient load must be like for one woman?