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[Guest guest]

Yikes , only just getting round to reading this and I have run out of

time to pack for our holiday - we leave in the early am (5 am or some God awful

time) and I haven't even got the packing done yet!

Had a quick read though while throwing down a coffee (I will try and go

through it more when I get back, but that prob isn't much use to you...) and to

be honest, um, I don't know why his glucose has gone up after decreasing cals

and increasing his ratio - it should be the opp happening! All I can think of is

maybe an illness brewing that hasn't shown anything clinical yet??

I would caution about upping his ratio whilst aiming for weight loss, be ready

to drop it again if he starts burning thru that body fat, cos he is likely to

overshoot, especially at the end of the day.

Now that you have made those changes, you will prob have to sit tight now for

a week or so to see what happens, it might take a few days to see some def

results ketone wise.

And yes, I do think it is poosble for seizure activity to build, I know that

when used to have a TC (his syndrome often starts off with a bang with

those nasties...) we would see things clear for a while, and our neuro always

said he was a believer in this one too, that the biggies in 's case could

be acting like a kind of a release, like we didn't see any myos or absences etc

for a day or two afterwards.

We didn't do the second depakote reduction, just the first 50 mg one 2 and a

half weeks ago - playing it safe and leaving the rest of the wean till we

return. No diet tweak needed as yet, and nope, STILL no ECG result - I have just

about given up on that one...!

Talk when I get back, best of luck for the next week or so, all I can suggest

from this end right now is not changing anything else til the dust from this one

settles...

----- Original Message -----

From: michelle paulson

Hey -

Am wanting to pick your brain - hopefully you can shed

some light b/c I'm stumped.

Opted NOT to increase 's Carnitor so he's still

at 990mg. Decided, instead, to decrease cals by 30

(to get some of this weight off) and to increase ratio

to 3.5:1 to bump those ketones. Made this change 2

days ago. He gets 250 cals 4x/day. Meals are at

7:30am - 12noon - 4pm and 7:45pm. Hasn't had a

seizure in 12 days.

Typical BK are 2.4 upon awakening and rise to about 5.

something at bed time. Last night his BK were " hi " -

off charts and his glucose was 75 (almost always low

60's). Coop had a seizure at 3:30 this morning and

his bk were 1.9 when he woke at 7:30. Glucose was 75

again. Tonight, BK was only 4.0 (weird number - much

lower than normal) and his glucose was 88. So his

glucose has been higher than normal the past two days

but food is exactly the same. And ketones are funky.

Nothing else besides ratio going from 3:1 to 3.5:1 and

30 less calories.

What could be up? Why would his ketones be

fluctuating and what's up w/his glucose being so high?

Also, we typically do the blood work first thing

before he eats in the morning but do it at night right

before bed which is about 15 minutes after he eats.

How long does it take for ketones/glucose to rise

following a meal? Should I be checking before he eats

dinner to get a better picture?

MIght it be his metabolism shifting and throwing

everything off and that's what caused the seizure

(although it's only been 2 days)? I just don't

understand why MOST mornings he doesn't have seizures

and his ketones are " typically " 2.something every

morning but then once every 2 wks. or so he'll have

one. Is it possible for electrical activity to " build "

up until the point it exceeds threshold and results in

seizure activity? was a bit " off " the past two

days - not as coordinated and not as interested in

therapy - plus he had two jerks yesterday. My theory

was that he was fighting off a seizure the past two

days and this morning " bam " . Now, he'll probably be

fine the next two wks. EXCEPT this high glucose

bothers me.

It's so bewildering to me. Your thoughts are greatly

appreciated as always!

Hey... on a side note - have been wondering how

has been doing w/the Depakote wean. Oh - you guys

must be getting ready to go on vacation for 10 days

very soon. Did you decide to make another reduction a

wk. ago or opt to hold off until after your holiday?

Have to tweak the diet yet? Any ECG results?

Will look forward to hearing from you - and if you

haven't already left - have a WONDERFUL " uneventful "

vacation.

(mom to )