Re: Help needed.......re: low ketones

November 26, 2004

How do you calculate the " cream drink " into the diet? Have you adjusted

calories so far on the diet.

What are the same old menus?

Bill

frumpymumma wrote:

>

> Hi, all.

>

> I am needing some suggestions.

>

> My daughter was on a 2.5 ratio and continually went too high with

> ketones at night and would wake up crying so after giving apple juice

> for some time at night I just lowered the ratio to 2:1. It worked

> well for a month or more, except that I saw a rapid decline in her

> behavior. No seizures, but she definitely became rather unfocused

> and sometimes just nasty in her behavior........and sometimes her

> ketones were not high enough by nightime and I had to give her a

> cream drink to get them up. Not all the time, but I always check

> before bedtime, as early morning is her " seizure time. "

>

> Basically, she has done well with lower ketones that build during the

> day and are at their highest by bedtime.

>

> Anyway after almost 1.5 months of no seizures she seizured last night

> at about 1:45 a.m., which is not her " usual " time. Her ketones were

> low and I gave her a cream drink, hoping she would not seizure

> again. She didn't.

>

> All day I have fed her the 2.5:1 meals and her ketones have been

> trace, no building at all. I finally supplemented with cream in the

> afternoon, yet still they stayed low.....then supplemented again

> before bed, as I hated putting her to bed with them so low.

>

> These ratios have worked for us. She has been back on the 2.5:1 for

> almost a week, but even at the 2:1 she had building ketones and was

> not seizuring because they were high range at bedtime.

>

> The menus are the same old menus. Fluids right where they are to

> be. Not sick.

>

> I did see a positive change in her behavior with the upping back to

> 2.5:1, and shared that the weaning ratios were hard on her

> daughter so I suspect they were on , too.

>

> The only thing I can think of is that this past week we have had less

> red meat and mostly fish and eggs. Could a change like that make all

> the difference?

>

> Thanks for any help you can give. I am miffed! And so sad that she

> seizured...

>

> , mum to , age 5, ketokid since May '04

>

November 26, 2004

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

Bill Barber torontobarber@...> wrote: