Re: Trouble Getting Large Ketones

[Guest guest]

He turn's three in January. Thanks for the reply.

Mike

_____

From: Barbara Swoyer

Sent: Wednesday, December 01, 2004 10:53 AM

To: ketogenic

Subject: Re: Trouble Getting Large Ketones

Mark, those calories seem a bit high to me? Just wondering out loud. Jake

weighs 60lbs and just went from 1400 calories to 1600. But, he's twice

Broc's size. Hold old is he again? I think my son was about Broc's weight

when we began at Hopkins, years ago, and they started him on 760 calories or

in that range. I think calories set too high could be a culprit. This made

sense until you mentioned the weight loss....so I'm stuck now

Sorry can't be of more help, but you're in good hands at Hopkins, let us

know what they say...

Barb Swoyer, Jake's mom

Trouble Getting Large Ketones

>

> The following is the monthly report that I sent to my son's dietician at

> Hopkins. I am also posting it here in hopes that some of you may be able

to

> help. My son started the diet in August. He is on a 4:1 ratio, 1000

> calories, 1100 cc of liquid. He weighs 27 pounds and is 37 inches tall.

We

> have struggled to get large ketones. When we started the diet we had

> ketones of 160 and we saw decreased seizures. This lasted a few days but

> since that time we are in the 40 - 80 range. In the past when we have

seen

> decreased seizures we have seen improved development so we are hopeful

that

> if we can make this thing work it will be very good for Broc so we are

still

> optimistic and not ready to give up but are frustrated that we can't get

> higher ketones.

>

> Here is the report that I sent.

>

>

> Good Morning Jane,

>

> We have continued to struggle this month with reaching large ketones.

> Broc's seizure continue to be 100 plus per day and ketones are generally

in

> the 40 to 80 range. As you suggested we did fast Broc last week. On

> Thursday the 25 th we gave him his 300 calorie meal at 8:00 p.m. We had

> planned on a 24 hour fast but on the evening of the 26 th Broc was ready

for

> bed before supper so we put him to bed and ended up fasting 36 hours. His

> ketones after the 24 hour fast were 160. The next morning his ketones

> (after a 36 hour fast) were 40 -80, at 11:00 they were 80, at 3:30 they

> were 80 and for the last several days they have been at 40 - 80.

>

> Currently he is on 1000 calories which we give as follows:

>

> 8:00 a.m. 300 calorie meal

> 12:00 p.m. 300 calorie meal

> 5:00 p.m. 100 calorie snack

> 7:30 p.m. 300 calorie meal

>

> Through September and October he maintained a weight of about 29 pounds

but

> this month he has dropped to about 27 pounds (we believe some of this may

> have been due to illness). His height is still 37 " which is where it was

> when we started the diet.

>

> Do you think the Depakote could be hindering us from getting larger

ketones?

>

>

> We have only been feeding 3 menus that you sent us and as you suggested we

> have not been feeding the fruit or vegetable for about 2 weeks. They are:

>

> baby beef

>

> 38 gm cream

>

> 42 gm DM Natures Goodness beef/gravy st 2

>

> 5 gm 10% fruit or 6 gm gp b veg

>

> 18 gm butter

>

> baby chick

>

> 39 gm cream

>

> 45 gm DM NG chick/gravy st 2

>

> 6 gm 10% fruit or 7 gm gp b veg

>

> 16 gm butter

>

> baby turkey

>

> 37 gm cream

>

> 40 gm DM NG turkey/gravy st 2

>

> 7 gm 10% fruit or 8 gm gp b veg

>

> 18 gm butter

>

>

>

> Please let us know what our next step should be.

>

>

>

> Thanks.

>

>

> Mike Bartenhagen

> mike@...> mike@...

> www.blackcows.com

>

>

>

>

[Guest guest]

Mark, those calories seem a bit high to me? Just wondering out loud. Jake

weighs 60lbs and just went from 1400 calories to 1600. But, he's twice

Broc's size. Hold old is he again? I think my son was about Broc's weight

when we began at Hopkins, years ago, and they started him on 760 calories or

in that range. I think calories set too high could be a culprit. This made

sense until you mentioned the weight loss....so I'm stuck now

Sorry can't be of more help, but you're in good hands at Hopkins, let us

know what they say...

Barb Swoyer, Jake's mom

Trouble Getting Large Ketones

>

> The following is the monthly report that I sent to my son's dietician at

> Hopkins. I am also posting it here in hopes that some of you may be able

to

> help. My son started the diet in August. He is on a 4:1 ratio, 1000

> calories, 1100 cc of liquid. He weighs 27 pounds and is 37 inches tall.

We

> have struggled to get large ketones. When we started the diet we had

> ketones of 160 and we saw decreased seizures. This lasted a few days but

> since that time we are in the 40 - 80 range. In the past when we have

seen

> decreased seizures we have seen improved development so we are hopeful

that

> if we can make this thing work it will be very good for Broc so we are

still

> optimistic and not ready to give up but are frustrated that we can't get

> higher ketones.

>

> Here is the report that I sent.

>

>

> Good Morning Jane,

>

> We have continued to struggle this month with reaching large ketones.

> Broc's seizure continue to be 100 plus per day and ketones are generally

in

> the 40 to 80 range. As you suggested we did fast Broc last week. On

> Thursday the 25 th we gave him his 300 calorie meal at 8:00 p.m. We had

> planned on a 24 hour fast but on the evening of the 26 th Broc was ready

for

> bed before supper so we put him to bed and ended up fasting 36 hours. His

> ketones after the 24 hour fast were 160. The next morning his ketones

> (after a 36 hour fast) were 40 -80, at 11:00 they were 80, at 3:30 they

> were 80 and for the last several days they have been at 40 - 80.

>

> Currently he is on 1000 calories which we give as follows:

>

> 8:00 a.m. 300 calorie meal

> 12:00 p.m. 300 calorie meal

> 5:00 p.m. 100 calorie snack

> 7:30 p.m. 300 calorie meal

>

> Through September and October he maintained a weight of about 29 pounds

but

> this month he has dropped to about 27 pounds (we believe some of this may

> have been due to illness). His height is still 37 " which is where it was

> when we started the diet.

>

> Do you think the Depakote could be hindering us from getting larger

ketones?

>

>

> We have only been feeding 3 menus that you sent us and as you suggested we

> have not been feeding the fruit or vegetable for about 2 weeks. They are:

>

> baby beef

>

> 38 gm cream

>

> 42 gm DM Natures Goodness beef/gravy st 2

>

> 5 gm 10% fruit or 6 gm gp b veg

>

> 18 gm butter

>

> baby chick

>

> 39 gm cream

>

> 45 gm DM NG chick/gravy st 2

>

> 6 gm 10% fruit or 7 gm gp b veg

>

> 16 gm butter

>

> baby turkey

>

> 37 gm cream

>

> 40 gm DM NG turkey/gravy st 2

>

> 7 gm 10% fruit or 8 gm gp b veg

>

> 18 gm butter

>

>

>

> Please let us know what our next step should be.

>

>

>

> Thanks.

>

>

> Mike Bartenhagen

> mike@...> mike@...

> www.blackcows.com

>

>

>

>

[Guest guest]

Maybe too much fluid? Jake seems to do worse when I try to get his allotted

amount into him. He drinks on average about 100cc per day, but anything

over and he seems to seize more. He's supposed to have more than

that...maybe 4-500cc more. 1100 seems high unless there's a good reason for

that too. Does he get it w/ the 4 food times, or scattered throughout the

day?

Trouble Getting Large Ketones

>

>

> >

> > The following is the monthly report that I sent to my son's dietician at

> > Hopkins. I am also posting it here in hopes that some of you may be

able

> to

> > help. My son started the diet in August. He is on a 4:1 ratio, 1000

> > calories, 1100 cc of liquid. He weighs 27 pounds and is 37 inches tall.

> We

> > have struggled to get large ketones. When we started the diet we had

> > ketones of 160 and we saw decreased seizures. This lasted a few days but

> > since that time we are in the 40 - 80 range. In the past when we have

> seen

> > decreased seizures we have seen improved development so we are hopeful

> that

> > if we can make this thing work it will be very good for Broc so we are

> still

> > optimistic and not ready to give up but are frustrated that we can't get

> > higher ketones.

> >

> > Here is the report that I sent.

> >

> >

> > Good Morning Jane,

> >

> > We have continued to struggle this month with reaching large ketones.

> > Broc's seizure continue to be 100 plus per day and ketones are generally

> in

> > the 40 to 80 range. As you suggested we did fast Broc last week. On

> > Thursday the 25 th we gave him his 300 calorie meal at 8:00 p.m. We had

> > planned on a 24 hour fast but on the evening of the 26 th Broc was ready

> for

> > bed before supper so we put him to bed and ended up fasting 36 hours.

His

> > ketones after the 24 hour fast were 160. The next morning his ketones

> > (after a 36 hour fast) were 40 -80, at 11:00 they were 80, at 3:30 they

> > were 80 and for the last several days they have been at 40 - 80.

> >

> > Currently he is on 1000 calories which we give as follows:

> >

> > 8:00 a.m. 300 calorie meal

> > 12:00 p.m. 300 calorie meal

> > 5:00 p.m. 100 calorie snack

> > 7:30 p.m. 300 calorie meal

> >

> > Through September and October he maintained a weight of about 29 pounds

> but

> > this month he has dropped to about 27 pounds (we believe some of this

may

> > have been due to illness). His height is still 37 " which is where it

was

> > when we started the diet.

> >

> > Do you think the Depakote could be hindering us from getting larger

> ketones?

> >

> >

> > We have only been feeding 3 menus that you sent us and as you suggested

we

> > have not been feeding the fruit or vegetable for about 2 weeks. They

are:

> >

> > baby beef

> >

> > 38 gm cream

> >

> > 42 gm DM Natures Goodness beef/gravy st 2

> >

> > 5 gm 10% fruit or 6 gm gp b veg

> >

> > 18 gm butter

> >

> > baby chick

> >

> > 39 gm cream

> >

> > 45 gm DM NG chick/gravy st 2

> >

> > 6 gm 10% fruit or 7 gm gp b veg

> >

> > 16 gm butter

> >

> > baby turkey

> >

> > 37 gm cream

> >

> > 40 gm DM NG turkey/gravy st 2

> >

> > 7 gm 10% fruit or 8 gm gp b veg

> >

> > 18 gm butter

> >

> >

> >

> > Please let us know what our next step should be.

> >

> >

> >

> > Thanks.

> >

> >

> > Mike Bartenhagen

> > mike@...> mike@...

> > www.blackcows.com

> >

> >

> >

> >

[Guest guest]

Hi Mike

I agree with others that calories could be a bit high.My son ,who is

2 years and 3 months is almost Broc's size,he is 90 cm tall and his

weight is 14 kg.We have already dropped calories twice and now

ph on 925 calories a day and he is pretty active,so average kid

his size would have to have less calories a day.

As for weight loss,could it be due to dehydration? I remember you

said Broc was not drinking well.

Hope you will find the righ solution soon

Natasha,mom to ph,suspected SMEI/Dravet's syndrome

> He turn's three in January. Thanks for the reply.

>

> Mike

>

> _____

>

> From: Barbara Swoyer [mailto:bswoyer@c...]

> Sent: Wednesday, December 01, 2004 10:53 AM

> To: ketogenic

> Subject: Re: Trouble Getting Large Ketones

>

>

> Mark, those calories seem a bit high to me? Just wondering out

loud. Jake

> weighs 60lbs and just went from 1400 calories to 1600. But, he's

twice

> Broc's size. Hold old is he again? I think my son was about

Broc's weight

> when we began at Hopkins, years ago, and they started him on 760

calories or

> in that range. I think calories set too high could be a culprit.

This made

> sense until you mentioned the weight loss....so I'm stuck now

>

> Sorry can't be of more help, but you're in good hands at Hopkins,

let us

> know what they say...

> Barb Swoyer, Jake's mom

>

> Trouble Getting Large Ketones

>

>

> >

> > The following is the monthly report that I sent to my son's

dietician at

> > Hopkins. I am also posting it here in hopes that some of you

may be able

> to

> > help. My son started the diet in August. He is on a 4:1 ratio,

1000

> > calories, 1100 cc of liquid. He weighs 27 pounds and is 37

inches tall.

> We

> > have struggled to get large ketones. When we started the diet

we had

> > ketones of 160 and we saw decreased seizures. This lasted a few

days but

> > since that time we are in the 40 - 80 range. In the past when

we have

> seen

> > decreased seizures we have seen improved development so we are

hopeful

> that

> > if we can make this thing work it will be very good for Broc so

we are

> still

> > optimistic and not ready to give up but are frustrated that we

can't get

> > higher ketones.

> >

> > Here is the report that I sent.

> >

> >

> > Good Morning Jane,

> >

> > We have continued to struggle this month with reaching large

ketones.

> > Broc's seizure continue to be 100 plus per day and ketones are

generally

> in

> > the 40 to 80 range. As you suggested we did fast Broc last

week. On

> > Thursday the 25 th we gave him his 300 calorie meal at 8:00

p.m. We had

> > planned on a 24 hour fast but on the evening of the 26 th Broc

was ready

> for

> > bed before supper so we put him to bed and ended up fasting 36

hours. His

> > ketones after the 24 hour fast were 160. The next morning his

ketones

> > (after a 36 hour fast) were 40 -80, at 11:00 they were 80, at

3:30 they

> > were 80 and for the last several days they have been at 40 - 80.

> >

> > Currently he is on 1000 calories which we give as follows:

> >

> > 8:00 a.m. 300 calorie meal

> > 12:00 p.m. 300 calorie meal

> > 5:00 p.m. 100 calorie snack

> > 7:30 p.m. 300 calorie meal

> >

> > Through September and October he maintained a weight of about 29

pounds

> but

> > this month he has dropped to about 27 pounds (we believe some of

this may

> > have been due to illness). His height is still 37 " which is

where it was

> > when we started the diet.

> >

> > Do you think the Depakote could be hindering us from getting

larger

> ketones?

> >

> >

> > We have only been feeding 3 menus that you sent us and as you

suggested we

> > have not been feeding the fruit or vegetable for about 2 weeks.

They are:

> >

> > baby beef

> >

> > 38 gm cream

> >

> > 42 gm DM Natures Goodness beef/gravy st 2

> >

> > 5 gm 10% fruit or 6 gm gp b veg

> >

> > 18 gm butter

> >

> > baby chick

> >

> > 39 gm cream

> >

> > 45 gm DM NG chick/gravy st 2

> >

> > 6 gm 10% fruit or 7 gm gp b veg

> >

> > 16 gm butter

> >

> > baby turkey

> >

> > 37 gm cream

> >

> > 40 gm DM NG turkey/gravy st 2

> >

> > 7 gm 10% fruit or 8 gm gp b veg

> >

> > 18 gm butter

> >

> >

> >

> > Please let us know what our next step should be.

> >

> >

> >

> > Thanks.

> >

> >

> > Mike Bartenhagen

> > mike@b...

> > www.blackcows.com

> >

> >

> >

> >

[Guest guest]

Hi Mike,

With ketones not getting up high enough, I too think he may poss be on too

many cals, but I would be very careful if you are contemplating reducing them,

due to his lack of height growth since starting the diet. This, along with the

fact that he hasn't actually gained weight would actually usually be two

indicators of the opposite scenario. Do you check his glucose? What is his

activity level like?

If basing cals on his 'usual' 29 lbs which is 13.15 kgs, the table on Pg 131

in Freemans book says 1-3 yr olds should be on roughly 70-75 cals per kg. So

that would be between 920 and 986 cals.

If he has recently lost weight due to illness though (this can happen because

the metabolic rate is higher when ill so cals are burnt thru faster), then right

now his body might be seeing that current 1000 cal total as too high for his

current body weight of 27 lbs, (12.25 kgs) which would only require about

857-918 cals.

Your dietician may have had a reason for calculating that present cal level,

for instance is that 29 lbs his ideal weight for height? Or is she aiming for

him to lose or gain some weight?

Re the meal spacing, that looks like quite a big gap between 12.00 and 7.30

with only a 100 cal snack - or does he have a long sleep in the afternoon?

Trouble Getting Large Ketones

The following is the monthly report that I sent to my son's dietician at

Hopkins. I am also posting it here in hopes that some of you may be able to

help. My son started the diet in August. He is on a 4:1 ratio, 1000

calories, 1100 cc of liquid. He weighs 27 pounds and is 37 inches tall. We

have struggled to get large ketones. When we started the diet we had

ketones of 160 and we saw decreased seizures. This lasted a few days but

since that time we are in the 40 - 80 range. In the past when we have seen

decreased seizures we have seen improved development so we are hopeful that

if we can make this thing work it will be very good for Broc so we are still

optimistic and not ready to give up but are frustrated that we can't get

higher ketones.

Here is the report that I sent.

Good Morning Jane,

We have continued to struggle this month with reaching large ketones.

Broc's seizure continue to be 100 plus per day and ketones are generally in

the 40 to 80 range. As you suggested we did fast Broc last week. On

Thursday the 25 th we gave him his 300 calorie meal at 8:00 p.m. We had

planned on a 24 hour fast but on the evening of the 26 th Broc was ready for

bed before supper so we put him to bed and ended up fasting 36 hours. His

ketones after the 24 hour fast were 160. The next morning his ketones

(after a 36 hour fast) were 40 -80, at 11:00 they were 80, at 3:30 they

were 80 and for the last several days they have been at 40 - 80.

Currently he is on 1000 calories which we give as follows:

8:00 a.m. 300 calorie meal

12:00 p.m. 300 calorie meal

5:00 p.m. 100 calorie snack

7:30 p.m. 300 calorie meal

Through September and October he maintained a weight of about 29 pounds but

this month he has dropped to about 27 pounds (we believe some of this may

have been due to illness). His height is still 37 " which is where it was

when we started the diet.

Do you think the Depakote could be hindering us from getting larger ketones?

[Guest guest]

re: lack of height, my son did not grow in height for the first two years on

the diet, (he was 17 mos old when we started). It wasn't until we raised

protein that we saw growth in height.

Barb Swoyer, Jake's mom

Trouble Getting Large Ketones

>

>

> The following is the monthly report that I sent to my son's dietician

at

> Hopkins. I am also posting it here in hopes that some of you may be

able to

> help. My son started the diet in August. He is on a 4:1 ratio, 1000

> calories, 1100 cc of liquid. He weighs 27 pounds and is 37 inches

tall. We

> have struggled to get large ketones. When we started the diet we had

> ketones of 160 and we saw decreased seizures. This lasted a few days

but

> since that time we are in the 40 - 80 range. In the past when we have

seen

> decreased seizures we have seen improved development so we are hopeful

that

> if we can make this thing work it will be very good for Broc so we are

still

> optimistic and not ready to give up but are frustrated that we can't

get

> higher ketones.

>

> Here is the report that I sent.

>

>

> Good Morning Jane,

>

> We have continued to struggle this month with reaching large ketones.

> Broc's seizure continue to be 100 plus per day and ketones are

generally in

> the 40 to 80 range. As you suggested we did fast Broc last week. On

> Thursday the 25 th we gave him his 300 calorie meal at 8:00 p.m. We

had

> planned on a 24 hour fast but on the evening of the 26 th Broc was

ready for

> bed before supper so we put him to bed and ended up fasting 36 hours.

His

> ketones after the 24 hour fast were 160. The next morning his ketones

> (after a 36 hour fast) were 40 -80, at 11:00 they were 80, at 3:30

they

> were 80 and for the last several days they have been at 40 - 80.

>

> Currently he is on 1000 calories which we give as follows:

>

> 8:00 a.m. 300 calorie meal

> 12:00 p.m. 300 calorie meal

> 5:00 p.m. 100 calorie snack

> 7:30 p.m. 300 calorie meal

>

> Through September and October he maintained a weight of about 29

pounds but

> this month he has dropped to about 27 pounds (we believe some of this

may

> have been due to illness). His height is still 37 " which is where it

was

> when we started the diet.

>

> Do you think the Depakote could be hindering us from getting larger

ketones?

>

>

>

>

>

>

>

[Guest guest]

I agree with Barb. I think his caloris are too high. We started the diet

there when he was 3 and I remeber him being on 900 calories. I think fluid

could be to high also.

[Guest guest]

We don't check his glucose. I think that his activity level is probably

high for his age. He is going to be 3 in January but because he is delayed

cognitively he doesn't sit and play or watch TV like other his age might.

Generally his play skills are walking, walking, and more walking.

He doesn't sleep much in the afternoons. We were giving a meal at 5:00 and

a snack at 8:00 but we switched them because his ketones were always very

low in the mornings so we thought this may help.

We we started the diet in Aug we were told that his weight was ideal for his

height.

Mike

_____

From: & Hill

Sent: Thursday, December 02, 2004 2:24 AM

To: ketogenic

Subject: Re: Trouble Getting Large Ketones

Hi Mike,

With ketones not getting up high enough, I too think he may poss be on too

many cals, but I would be very careful if you are contemplating reducing

them, due to his lack of height growth since starting the diet. This, along

with the fact that he hasn't actually gained weight would actually usually

be two indicators of the opposite scenario. Do you check his glucose? What

is his activity level like?

If basing cals on his 'usual' 29 lbs which is 13.15 kgs, the table on Pg

131 in Freemans book says 1-3 yr olds should be on roughly 70-75 cals per

kg. So that would be between 920 and 986 cals.

If he has recently lost weight due to illness though (this can happen

because the metabolic rate is higher when ill so cals are burnt thru

faster), then right now his body might be seeing that current 1000 cal total

as too high for his current body weight of 27 lbs, (12.25 kgs) which would

only require about 857-918 cals.

Your dietician may have had a reason for calculating that present cal

level, for instance is that 29 lbs his ideal weight for height? Or is she

aiming for him to lose or gain some weight?

Re the meal spacing, that looks like quite a big gap between 12.00 and

7.30 with only a 100 cal snack - or does he have a long sleep in the

afternoon?

Trouble Getting Large Ketones

The following is the monthly report that I sent to my son's dietician at

Hopkins. I am also posting it here in hopes that some of you may be

able to

help. My son started the diet in August. He is on a 4:1 ratio, 1000

calories, 1100 cc of liquid. He weighs 27 pounds and is 37 inches tall.

We

have struggled to get large ketones. When we started the diet we had

ketones of 160 and we saw decreased seizures. This lasted a few days but

since that time we are in the 40 - 80 range. In the past when we have

seen

decreased seizures we have seen improved development so we are hopeful

that

if we can make this thing work it will be very good for Broc so we are

still

optimistic and not ready to give up but are frustrated that we can't get

higher ketones.

Here is the report that I sent.

Good Morning Jane,

We have continued to struggle this month with reaching large ketones.

Broc's seizure continue to be 100 plus per day and ketones are generally

in

the 40 to 80 range. As you suggested we did fast Broc last week. On

Thursday the 25 th we gave him his 300 calorie meal at 8:00 p.m. We had

planned on a 24 hour fast but on the evening of the 26 th Broc was ready

for

bed before supper so we put him to bed and ended up fasting 36 hours.

His

ketones after the 24 hour fast were 160. The next morning his ketones

(after a 36 hour fast) were 40 -80, at 11:00 they were 80, at 3:30 they

were 80 and for the last several days they have been at 40 - 80.

Currently he is on 1000 calories which we give as follows:

8:00 a.m. 300 calorie meal

12:00 p.m. 300 calorie meal

5:00 p.m. 100 calorie snack

7:30 p.m. 300 calorie meal

Through September and October he maintained a weight of about 29 pounds

but

this month he has dropped to about 27 pounds (we believe some of this

may

have been due to illness). His height is still 37 " which is where it

was

when we started the diet.

Do you think the Depakote could be hindering us from getting larger

ketones?

[Guest guest]

He gets the liquid throughout the day.

Mike

_____

From: Barbara Swoyer

Sent: Wednesday, December 01, 2004 11:05 AM

To: ketogenic

Subject: Re: Trouble Getting Large Ketones

Maybe too much fluid? Jake seems to do worse when I try to get his allotted

amount into him. He drinks on average about 100cc per day, but anything

over and he seems to seize more. He's supposed to have more than

that...maybe 4-500cc more. 1100 seems high unless there's a good reason for

that too. Does he get it w/ the 4 food times, or scattered throughout the

day?

Trouble Getting Large Ketones

>

>

> >

> > The following is the monthly report that I sent to my son's dietician at

> > Hopkins. I am also posting it here in hopes that some of you may be

able

> to

> > help. My son started the diet in August. He is on a 4:1 ratio, 1000

> > calories, 1100 cc of liquid. He weighs 27 pounds and is 37 inches tall.

> We

> > have struggled to get large ketones. When we started the diet we had

> > ketones of 160 and we saw decreased seizures. This lasted a few days but

> > since that time we are in the 40 - 80 range. In the past when we have

> seen

> > decreased seizures we have seen improved development so we are hopeful

> that

> > if we can make this thing work it will be very good for Broc so we are

> still

> > optimistic and not ready to give up but are frustrated that we can't get

> > higher ketones.

> >

> > Here is the report that I sent.

> >

> >

> > Good Morning Jane,

> >

> > We have continued to struggle this month with reaching large ketones.

> > Broc's seizure continue to be 100 plus per day and ketones are generally

> in

> > the 40 to 80 range. As you suggested we did fast Broc last week. On

> > Thursday the 25 th we gave him his 300 calorie meal at 8:00 p.m. We had

> > planned on a 24 hour fast but on the evening of the 26 th Broc was ready

> for

> > bed before supper so we put him to bed and ended up fasting 36 hours.

His

> > ketones after the 24 hour fast were 160. The next morning his ketones

> > (after a 36 hour fast) were 40 -80, at 11:00 they were 80, at 3:30 they

> > were 80 and for the last several days they have been at 40 - 80.

> >

> > Currently he is on 1000 calories which we give as follows:

> >

> > 8:00 a.m. 300 calorie meal

> > 12:00 p.m. 300 calorie meal

> > 5:00 p.m. 100 calorie snack

> > 7:30 p.m. 300 calorie meal

> >

> > Through September and October he maintained a weight of about 29 pounds

> but

> > this month he has dropped to about 27 pounds (we believe some of this

may

> > have been due to illness). His height is still 37 " which is where it

was

> > when we started the diet.

> >

> > Do you think the Depakote could be hindering us from getting larger

> ketones?

> >

> >

> > We have only been feeding 3 menus that you sent us and as you suggested

we

> > have not been feeding the fruit or vegetable for about 2 weeks. They

are:

> >

> > baby beef

> >

> > 38 gm cream

> >

> > 42 gm DM Natures Goodness beef/gravy st 2

> >

> > 5 gm 10% fruit or 6 gm gp b veg

> >

> > 18 gm butter

> >

> > baby chick

> >

> > 39 gm cream

> >

> > 45 gm DM NG chick/gravy st 2

> >

> > 6 gm 10% fruit or 7 gm gp b veg

> >

> > 16 gm butter

> >

> > baby turkey

> >

> > 37 gm cream

> >

> > 40 gm DM NG turkey/gravy st 2

> >

> > 7 gm 10% fruit or 8 gm gp b veg

> >

> > 18 gm butter

> >

> >

> >

> > Please let us know what our next step should be.

> >

> >

> >

> > Thanks.

> >

> >

> > Mike Bartenhagen

> > mike@...> mike@...

> > www.blackcows.com

> >

> >

> >

> >

[Guest guest]

Broc is drinking much better now. We found out that he loves tea.

Mike

_____

From: natashagainford

Sent: Wednesday, December 01, 2004 2:05 PM

To: ketogenic

Subject: Re: Trouble Getting Large Ketones

Hi Mike

I agree with others that calories could be a bit high.My son ,who is

2 years and 3 months is almost Broc's size,he is 90 cm tall and his

weight is 14 kg.We have already dropped calories twice and now

ph on 925 calories a day and he is pretty active,so average kid

his size would have to have less calories a day.

As for weight loss,could it be due to dehydration? I remember you

said Broc was not drinking well.

Hope you will find the righ solution soon

Natasha,mom to ph,suspected SMEI/Dravet's syndrome

> He turn's three in January. Thanks for the reply.

>

> Mike

>

> _____

>

> From: Barbara Swoyer [mailto:bswoyer@c...]

> Sent: Wednesday, December 01, 2004 10:53 AM

> To: ketogenic

> Subject: Re: Trouble Getting Large Ketones

>

>

> Mark, those calories seem a bit high to me? Just wondering out

loud. Jake

> weighs 60lbs and just went from 1400 calories to 1600. But, he's

twice

> Broc's size. Hold old is he again? I think my son was about

Broc's weight

> when we began at Hopkins, years ago, and they started him on 760

calories or

> in that range. I think calories set too high could be a culprit.

This made

> sense until you mentioned the weight loss....so I'm stuck now

>

> Sorry can't be of more help, but you're in good hands at Hopkins,

let us

> know what they say...

> Barb Swoyer, Jake's mom

>

> Trouble Getting Large Ketones

>

>

> >

> > The following is the monthly report that I sent to my son's

dietician at

> > Hopkins. I am also posting it here in hopes that some of you

may be able

> to

> > help. My son started the diet in August. He is on a 4:1 ratio,

1000

> > calories, 1100 cc of liquid. He weighs 27 pounds and is 37

inches tall.

> We

> > have struggled to get large ketones. When we started the diet

we had

> > ketones of 160 and we saw decreased seizures. This lasted a few

days but

> > since that time we are in the 40 - 80 range. In the past when

we have

> seen

> > decreased seizures we have seen improved development so we are

hopeful

> that

> > if we can make this thing work it will be very good for Broc so

we are

> still

> > optimistic and not ready to give up but are frustrated that we

can't get

> > higher ketones.

> >

> > Here is the report that I sent.

> >

> >

> > Good Morning Jane,

> >

> > We have continued to struggle this month with reaching large

ketones.

> > Broc's seizure continue to be 100 plus per day and ketones are

generally

> in

> > the 40 to 80 range. As you suggested we did fast Broc last

week. On

> > Thursday the 25 th we gave him his 300 calorie meal at 8:00

p.m. We had

> > planned on a 24 hour fast but on the evening of the 26 th Broc

was ready

> for

> > bed before supper so we put him to bed and ended up fasting 36

hours. His

> > ketones after the 24 hour fast were 160. The next morning his

ketones

> > (after a 36 hour fast) were 40 -80, at 11:00 they were 80, at

3:30 they

> > were 80 and for the last several days they have been at 40 - 80.

> >

> > Currently he is on 1000 calories which we give as follows:

> >

> > 8:00 a.m. 300 calorie meal

> > 12:00 p.m. 300 calorie meal

> > 5:00 p.m. 100 calorie snack

> > 7:30 p.m. 300 calorie meal

> >

> > Through September and October he maintained a weight of about 29

pounds

> but

> > this month he has dropped to about 27 pounds (we believe some of

this may

> > have been due to illness). His height is still 37 " which is

where it was

> > when we started the diet.

> >

> > Do you think the Depakote could be hindering us from getting

larger

> ketones?

> >

> >

> > We have only been feeding 3 menus that you sent us and as you

suggested we

> > have not been feeding the fruit or vegetable for about 2 weeks.

They are:

> >

> > baby beef

> >

> > 38 gm cream

> >

> > 42 gm DM Natures Goodness beef/gravy st 2

> >

> > 5 gm 10% fruit or 6 gm gp b veg

> >

> > 18 gm butter

> >

> > baby chick

> >

> > 39 gm cream

> >

> > 45 gm DM NG chick/gravy st 2

> >

> > 6 gm 10% fruit or 7 gm gp b veg

> >

> > 16 gm butter

> >

> > baby turkey

> >

> > 37 gm cream

> >

> > 40 gm DM NG turkey/gravy st 2

> >

> > 7 gm 10% fruit or 8 gm gp b veg

> >

> > 18 gm butter

> >

> >

> >

> > Please let us know what our next step should be.

> >

> >

> >

> > Thanks.

> >

> >

> > Mike Bartenhagen

> > mike@b...

> > www.blackcows.com

> >

> >

> >

> >

[Guest guest]

Absolutely. That was a major goal of going on the diet.

Bill

Valente. Lois wrote:

>

>

> Has anyone weaned the AEDs without complete control?

>

>

>

> Lois.

>

>

[Guest guest]

K, if he is more active for whatever reason, with the walking, walking and

more walking then it may well be a cal issue at the opp end of the spectrum,

esp bearing in mind that he has not gained in height since starting the diet.

We too give a bigger meal than just a snack before bed, has 300 cals at

that time as well, but just looking at Broc's spacing, the 12-7.30 seems like a

very big gap for a period in the day where ketones do traditionally rise,

meaning it is a time of day where the metabolism is often running on full speed.

If for example that 300 cals before bed is a bit top heavy, he would have

enough stored glycogen on board from overnight to use to top him up during

periods like that 12.00 - 7.30 gap, which would in turn lower ketones. That is

why I am wondering if some glucose checks might help you to see if there are

certain points in the day where he is going too high, thereby lowering ketones.

Re: Trouble Getting Large Ketones

Hi Mike,

With ketones not getting up high enough, I too think he may poss be on too

many cals, but I would be very careful if you are contemplating reducing

them, due to his lack of height growth since starting the diet. This, along

with the fact that he hasn't actually gained weight would actually usually

be two indicators of the opposite scenario. Do you check his glucose? What

is his activity level like?

If basing cals on his 'usual' 29 lbs which is 13.15 kgs, the table on Pg

131 in Freemans book says 1-3 yr olds should be on roughly 70-75 cals per

kg. So that would be between 920 and 986 cals.

If he has recently lost weight due to illness though (this can happen

because the metabolic rate is higher when ill so cals are burnt thru

faster), then right now his body might be seeing that current 1000 cal total

as too high for his current body weight of 27 lbs, (12.25 kgs) which would

only require about 857-918 cals.

Your dietician may have had a reason for calculating that present cal

level, for instance is that 29 lbs his ideal weight for height? Or is she

aiming for him to lose or gain some weight?

Re the meal spacing, that looks like quite a big gap between 12.00 and

7.30 with only a 100 cal snack - or does he have a long sleep in the

afternoon?