Re: Paleness/ clammy/irritable Barb Bill

[Guest guest]

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]

I am thinking too ketotic, likely because of the diet/depakote

combination.

Meaning drop the ratio a little or drop some depakote. Personally I

would lean to the latter but I know you have been through a hard time

and are looking for some stability. But if he is 180 in the early

afternoon he is likely way too ketotic at night.

So push the fluids (do whatever you have to do to get it in) and think

about which to lower.

Good luck

, 's mom

lloydandleslie@... wrote:

> 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]

,

Drinking is essential on the diet as it can compromise the entire body;

kidney stones, constipation to name only a couple.

He should be getting 1290 cc based on 1cc per calorie.

Give him whatever he will drink would be my suggestion. I wouldn't worry

about anything much other than that. Otherwise the diet and his health

are in jeopardy.

I do think that the depakote can make the high ketones worse. Add that

to not enough fluids and you are possibly in danger. But if he isn't

showing other symptoms, it may be okay. The high ketone readings may be

coming from the low fluids. How is the urine output? colour?

We found that the specific gravity sticks don't work with the diet. The

high ketones throws off the readings. The most important thing is to

look for symptoms; urine output, dry mouth, etc.

It sounds like you are doing well on the seizure front. Therefore, while

it is hard to be patient, I would recommend leaving things alone for 2

weeks, except for getting fluids in.

All the best,

Bill

lloydandleslie@... wrote:

> 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

>

>

>

>

>

>