Re: Help needed.......re: low ketones - to Bill

[Guest guest]

Thanks,

I am combing the keto book for ideas... Haven't given up! .

allan banks aaacbanksy@...> wrote:

brenda,

you have been such a good support to everyone. i'm

sure everyone here is thinking of you and wishing you

all the best even if we don't always respond (hard to

always find the time with our crazy lives!) i hope

things go better for you and mary soon. sorry i can't

offer advice but we are sort of having the same thing

here. hope some answers come from the tests. hang in

there and know we are all here if you need to vent.

cheers, andrea.

--- frumpymumma@...> wrote:

> Dear Bill

>

> Well, I guess I went from 900 plus any extras to get

> the ketones up, to 800 plus a 50 calorie snack to

> take them down or push them up. Not a great change,

> but like you said, when I added 200 calories the 900

> calories became 1100! And, it was happening more

> and more.

>

> She has had a nasty five days of seizures. She is

> like a rag doll, they wipe her out. I am taking her

> in for bloodwork this week and the neuro wants an

> EEG, which she hates, so it should be another awful

> week, only this one is planned.

>

> Menus of late are turkey! Here in U.S. we just had

> Thanksgiving. She is eating, through it all and

> ketones are hanging in around 80 or higher today. I

> have no idea what all the seizures do to the ketone

> levels - what they would be without all the seizures

> going on.

>

> Seizure count seems about the same as pre-diet over

> the six months on keto, but we have had nice

> stretches without seizures which has been nice.

> However, even though she does not seizure on lower

> ketones her mental state is not as good and hunger

> is a constant, so I have got to get and keep ketones

> higher for her.

>

> Also, after said she never gave over 30g of

> cream, I may need to change this, as I do give up to

> 60 some meals...

>

> After all the seizures this week I must say I am a

> bit discouraged, with no real keto team for support,

> but we have no alternatives, save a miracle healing,

> so I am keeping her on it and hoping to discern how

> to keep ketones higher without driving her crazy

> with them.

>

> Thanks for your support. Days and nights are a blur

> these days, but the seizures are winding down, it

> seems.

>

> , 's mumma

>

> Bill Barber torontobarber@...> wrote:

> ,

>

> I can understand; 60 gm of cream is about 200

> calories. That's certainly

> going to throw off the diet completely.

>

> Your changes in calories and ratio may still need

> some more fine tuning.

> You will have to keep good records and be patient.

> It can take weeks or

> months to get it correct.

>

> Yes, I think that the hunger is much worse with

> lower ketones. You also

> need to adjust calories with changes in the ratio.

> As for the seizures,

> well more fine tuning is the best advice I can come

> up with. That may

> not be satisfactory for you.

>

> Maybe you should review the " same old menus " as

> things can change even

> if you aren't aware of anything different. Try

> posting your menus here

> and maybe someone will see something.

>

> Bill

>

> wrote:

> > Dear Bill

> >

> > When she didn't have the ketones built by bedtime

> I would just give

> > her some cream and water... that were above and

> beyond her calculated

> > 900 calories, so it threw off the diet. Usually

> 30 and 1 oz. of

> > water, or 60g and one 2 oz. of water. Finally

> stopped that and upped

> > the ratio to 2.5. Still not high enough

> ketones... so now lowered

> > the calories to 800. I have thought she was

> getting too many for

> > some time, but when she wasn't seizuring I didn't

> want to mess with

> > it. Well, she is seizuring now, and I have her at

> the 800 calories

> > and the 2.5.............and the drop in calories

> brought them right

> > back up!!!

> >

> > The ratio did a nice attitude change.

> Interesting. The changes

> > didn't come all at once, but did not wait two

> weeks, as didn't have

> > two weeks. She needed the ketones! Lower ratio

> (2:1) had her in a

> > nasty attitude all the time. NASTY. It must be a

> hard ratio.

> > said Jess had a hard time on lower ratios

> when they were

> > weaning. is delayed and can't tell me how

> she feels, but if her

> > behavior was an indicator, she felt awful!

> >

> > Anyway, higher ratio, lower calories are producing

> nice ketones. Now

> > for an end to the seizures. Can seizures " build "

> ? She just seems

> > so much more peaceful than she has been, even

> though she wasn't

> > seizuring before.

> >

> > Thanks... " same old menus " are just ones I have

> been using with

> > success for some time, not new innovative ones

> that may have had

> > seizure triggers in them that I was not aware of.

> >

> > , 's mumma

>

>

>

> " The Ketogenic Diet....a realistic treatment

> option, NOT just a last resort! "

>

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>

>

>

[Guest guest]

,

800 calories is low and quite a change from 1100 that you were using

previously. Watch the weight very carefully. Use an accurate scale(I

like the old kind with the sliding weights. I hold my daughter and then

weigh myself). Get the weight once a week, before a meal at the same

time of day, same clothing, etc. Also you will have to watch height too.

You may find that you need to increase 25 calories after 2 or 3 weeks to

get it just right. 3:1 is a high ratio if you are using a computer meal

planner. With those calories and ratio, you should start to see higher

ketones soon.

We found olive oil to be a strong flavour and hard to digest, so we

favour safflower oil or canola oil which are still healthy, but milder

flavour and maybe easier to digest.

Not to be nagging, but you are using a very good vitamin and mineral

supplement, right? 800 calories and 3:1 ratio is very limited nutrition.

Bill

wrote:

> Dear Bill -

>

> Thanks for questioning me about the snack. It is crazy and we are

> not snack people, so unless we have a problem I am forgetting about

> it and sticking with the 800 calories!

>

> I have wanted to drop calories and this is my chance. She has been

> sick and not eating three meals a day, so the timing is perfect. I

> must say, 800 calories on a 3:1 ratio sure doesn't look like much.

> And the keto yogurt (sour cream and olive oil) looked a bit oily and

> nasty. Not sure it will be a sell for tomorrow's breakfast.

>

> Meal plans with different proportions don't just work as easily when

> you increase the ratio, like they do when you decrease.. and they

> seem to be bigger and better. Oh, well.

>

> . Ketones at good solid middle range tonight, for which I am

> thankful.

>