Re: Paleness/ clammy/irritable -

[Guest guest]

Since he is on depakote , I would be tempted to get a blood

ketone/glucose monitor if it were me.

False urine ketone readings can occur with this one, (dep metabolites are

excreted in urine which can react with the test strip) so to be sure, before

changing anything too dramatically, I think I would check blood readings as

well.

Getting an accurate early morn blood ketone reading, esp since the morn seems

to now be his vulnerable time (yippee on the dramatic seizure decrease btw -

shows you're on the right track... would prob be very useful too - as urine

readings from overnight, whether on dep or not, are not that helpful. Well they

never were here anyways - because the high night ketones mix overnight with the

lower early morn ones, and will give you a skewed result.

We had to increase the cal amount of 's last meal before bed before we

finally saw good strong early am (blood) ketones, he went from a 50 cal bedtime

snack to a 100 cal one, eventually ended up on 300 cals just before bed, which

is where he is still up to now, so that might be something to consider depending

on what his morn ketones are.

His current meal spacings look similar to 's, we do his as b/f at 8 am,

snack at 10.30 am, lunch at 12.30 pm, 'dinner' at 4 pm (we used to do a snack at

3.30 after school, but found he needed more than a snack, he needed an actual

meal - 375 cals is the total for that one at the mo out of his daily 1550 cal

allowance) to stop his late aft/evening ketones going too high) and then he has

that 300 cal meal just before bed at about 7.45 pm.

With ketones looking that high on the urine stix, I don't think a higher ratio

would be a good idea just yet, if blood ketones turn out to be lower than you

expected, poss, but I would double check the bhb levels first I think. Weight

changes over the next week or 2 should help you decide whether it is a cal

issue?

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

From: lloydandleslie@...

Barb, Bill and others

I think he may be getting dehydrated b/c he is not drinking hardly at all.

I had tried to give up red drinks b/c of the hyperactivity but that is all

he

wants so we're back to red crystal light today. I think he should be

getting 1260 cc based on him being 21.4 kilos at 60 cc per kilo. Does that

sound

right? He is not getting near that. We're working on it. I just checked

his

ketones at 1 pm and they were 180 immed. Night they are 180 also. Is that

to early in the day for ketones that high? But, isn't it true that depakote

can alter urine ketones. I'm wondering about that too. He is on depakote

as

monotherapy at 325 mg perday. So much to think about.

I don't have the Spec gravity sticks but I'm going to get them today. What

should I be looking for? Its been awhile since we've used them. We see a

new dietician tommorrow and I am crossing my fingers that she knows what

she is

doing.

As far as meals, he gets 3 meals and 3 snacks. His meals are spaced at

breakfast at 7:45, snack at 10:30, lunch at 12:30, snack at 3:30, dinner at

6:00

pm and snack at 8:00 pm. His meals are 333 calories and his snacks are

btwn

90-100. total of 1290 which I know that you think might be too high but I

don't know how he could handle any less and he is sooooo

ketotic.

Any ideas or red flags? Seizures were none yesterday and today they saw 5

head drops at school in am but still much less than 2 weeks ago when there

were 60-100 head drops in 2 hr period. If we keep seeing the morning head

drops, I'm thinking maybe snack later or higher ratio??

THanks

[Guest guest]

We are taking this weekend for labs and getting a BHB level.

Where do you get a blood ketone monitor? How old is ? 8 right? 1550

calories seems like alot. Thats awesome. s portions are so small.

We are trying with zucchini and turnips and whatever else we can to make them

bigger but they seem so small. My mom was here yesterday and was crying and

told me she couldn't sleep because of how little we are feeing him. Like I

don't feel bad enough. It is so frustrating. I can't make her understand

why he needs to be on this diet. its been 4 years of keto or atkins and she

still doesn't get it. She is my only support but she brings me down every time

we talk about the diet. I just want to cry.

I think we are holding tight for a few weeks and then will make changes if

needed.

How far down are you on the depakote?? I hope things continue to go well

for you.

[Guest guest]

Hmm, if your Mom is your only support, and she is making you feel like that,

I'm not surpised you want to cry!

I'm sure seeing him in major seizure mode has to be more upsetting for her? No

question in my mind which one of the 2 is worse....

With ketones being in the high range though, (well we think based on the urine

readings anyways..) I am suprised he is hungry, as usually the higher the

ketones, the less appetite they have. I asked the other day whether he

ever really 'felt hungry'. And he said 'no...I eat it all because you say I have

to'. Aw, so the opp here, and when my Mom has him over there looking after him,

she rings me and says does he really have to eat all of this if he isn't

hungry?

Yep Mom - he does..

Yes, has just turned 8 and is on 1550 cals, but this is actually still

at the lower end of the range for him - he weighs 28 kgs and is 130 cm tall, so

as a 7-10 yr old he could actually go up to 1680 cals per kg if pushed. He had a

ree dx test (calorimetery) a few mths ago (can you arrange on of these for

?) that confirmed he is in the ballpark, though the dietician thinks

he could go a bit higher to try and get some catch up height growth back - he

has dropped from the 97th to about the 60th percentile since starting the diet 3

1/2 yrs ago. Lately he has been hanging in there, but the big drop in

percentiles came in 2002 and 2003 when he was malnourished and went catabolic

and that is what we are currently trying to regain.

So converting 's stats - he weighs about 21.3 kgs and is 114 cm

tall - I think? If taking the 7-10 yr cal range (basing on him turning 7

shortly) of 55-60 cals per kg, that range would be 1171-1278 cals. Based on the

4-6 age range of 65-68 cals per kg, it would previously have been 1384 -1448

cals, so maybe he too needs some catch up growth if he wasn't in that cal range

before? I just had a quick look now, and he is currently the 10th percentile for

height, and just above the 15th for weight?

If he still remains hungry if ketones are shown to be in the high range, maybe

he does need more cals? Was he that low on the height percentile graph before he

started keto? Like is he 'meant' to be a taller kiddie ? Were you restricting

cals on Atkins? Did he grow in height whilst on that rather than on keto?

PS - Dep down to 275 mgs per day now, last 25 mg reduction was 3 days ago,

slowed the wean back down now that his carnitine levels have started to climb

back up.

Oh - and the bhb monitor should be sold in pharmacies, or the Medisense

outlet, or we can also get them through the diabetic societies over here.

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

From: lloydandleslie@...

We are taking this weekend for labs and getting a BHB level.

Where do you get a blood ketone monitor? How old is ? 8 right? 1550

calories seems like alot. Thats awesome. s portions are so

small.

We are trying with zucchini and turnips and whatever else we can to make

them

bigger but they seem so small. My mom was here yesterday and was crying

and

told me she couldn't sleep because of how little we are feeing him. Like I

don't feel bad enough. It is so frustrating. I can't make her understand

why he needs to be on this diet. its been 4 years of keto or atkins and

she

still doesn't get it. She is my only support but she brings me down every

time

we talk about the diet. I just want to cry.

I think we are holding tight for a few weeks and then will make changes if

needed.

How far down are you on the depakote?? I hope things continue to go well

for you.