Re: Calculating the diet...

[Guest guest]

Judy,

We had a great dietician and I always let her guide me when doing the basic diet

calculations, then did all the meals myself on the mealplanner program. The few

times I set off on my own adjusting calories and protein amounts, I usually

ended up being wrong and making everything worse.

I was concerned about Katera's growth because she started out on the short side

and had not grown at all in the first year of the diet so I thought it made

sense to increase her protein. She had initially been set at .97 gms per kilo,

which is pretty standard for most kids on the diet (Katera was 4 when she

started)...... but I increased it on my own up to 1.2 gms per kilo. In the long

run, this really did nothing but get us into a stickier mess with breakthrough

seizures. I will have to go hunting for the post I've saved on the reasoning

behind it because I just can't remember right now. I'll hunt later and send it

over. Anyway, the dietician explained to me that it's simply being in a state of

ketosis that impedes growth...... the extra protein will not help and may

hinder. I'd rather see him get the extra carb than protein at this point....

after being on the diet that long. Does he stay in ketosis solidly, all the

time? I'd be concerned about him being too ketotic if they were always up at

160..... I always felt like they could be even higher than I realized if the

sticks could measure that high. Does he show any symptoms when ketones are

really dark? Lethargic? Cranky?

I would not be terribly worried about the fluid amounts unless you're seeing him

with very high ketones all the time..... and he starts refusing to eat or drink.

Then you could be looking at borderline dehydration and be hovering close to

getting into a mess with that..... especially during the hot weather of summer.

Katera would tend to refuse to drink when she was overly ketotic..... which

happened frequently and easily with her. We had to keep lowering and lowering

her ratio. Toward the end, she was making 80 to 160 ketones all the time at only

a 2:1 ratio.

Calories...... I'd think you're fine unless you see him losing weight. Calorie

restriction is actually part of the seizure control picture.... so you are

better off setting them low and watching his weight carefully. However, our

clinic says they see the best control in kids that are on the skinny side

(compared to their height).... at around the 25th percentile. We kept trying to

get Katera's weight down because she started the diet at above the 50th

percentile.

Another thing I would say you could do to fine tune, if he was eating regular

food, would be cutting out all grain-based carbs and only using veggie

sources..... but obviously that isn't in the picture here. I'm not familiar

with the formulas, so can't offer any insight on that.

Sorry to hear you're dealing with these breakthrough clusters. It's hard to know

whether coming off the diet would make things better or worse. I know that

dilemma..... don't envy you right now. It's always such a tough call. I know

we've had enough med nightmares to have made me not want to go down that road

again but " never say never " is my motto..... much as I hate to admit it.

Don't know if this is any help..... that's all I can think of.

Patti

Calculating the diet...

Hi all...I'm looking for input on my calculations. Our dietician feels

we've fine tuned as much as we can, but I'm not so sure. 's been

having seizures (clusters of myoclonics) upon waking in the morning and from

naps. Here's his current stats, so you know what we're working with:

3:1 ratio

Ketones high 80-160

5 yrs old

40.5 inches tall (about 6th percentile) and 40.5 lbs or 18.37 kg (50th

percentile)

Calories are currently at 810 and protein at 18.82 per day.

After going through the Ketogenic Diet book (3rd edition) I made some new

calculations and would love it if you all would double check my numbers and

give me feedback.

CALORIES:

I used table 8-1 on page 120 even though it only goes up to 4 yrs old. Is

there another source for 5 yr olds??

Anyway I came up with:

85 x .55 = 46.75

46.75 x 18.37 kg = 859 calories

Question: I know 75% of RDA is too high for 's activity level, so I

used 55%. How do the rest of you determine activity level? doesn't

walk or even crawl, but we frequently pattern him through crawling and take

him in the pool where he does a lot of kicking...other than that he's just

working on holding his head and trunk up and trying to do some reaching.

PROTEIN:

I calculated 1.1 gm per kg (18.37) which is 20.2 grams.

Question: Based on 's height do you think this is too high/low/just

right? Pre diet (3 yrs ago) his height and weight were both in the 50th

percentile, but now height is in the 6th. Does this indicate anything?

FLUIDS:

I used the table on page 123.

800 ml + 40 ml/kg

800 + 735 = 1535

1535 x 80% = 1228

Question: is on RCF version of the diet. He has 4 bottles of

formula/water per day which gives him about 1000 mls...other than that he

sips a little more water or has a koolaid popsicle but not enough to bring

him up to 1228. He's not dehydrated, but could too little fluid affect the

diet? Did I calculate the 1228 correctly?

Any other ideas?? We're about ready to give up on the diet, but our little

keppra trial a few months ago reminded me of all the nasty side effects of

meds. I'm tempted to just do nothing a see where we stand.

Thanks for listening and any help would be greatly appreciated!

Judy, mom to

[Guest guest]

Judy,

We had a great dietician and I always let her guide me when doing the basic diet

calculations, then did all the meals myself on the mealplanner program. The few

times I set off on my own adjusting calories and protein amounts, I usually

ended up being wrong and making everything worse.

I was concerned about Katera's growth because she started out on the short side

and had not grown at all in the first year of the diet so I thought it made

sense to increase her protein. She had initially been set at .97 gms per kilo,

which is pretty standard for most kids on the diet (Katera was 4 when she

started)...... but I increased it on my own up to 1.2 gms per kilo. In the long

run, this really did nothing but get us into a stickier mess with breakthrough

seizures. I will have to go hunting for the post I've saved on the reasoning

behind it because I just can't remember right now. I'll hunt later and send it

over. Anyway, the dietician explained to me that it's simply being in a state of

ketosis that impedes growth...... the extra protein will not help and may

hinder. I'd rather see him get the extra carb than protein at this point....

after being on the diet that long. Does he stay in ketosis solidly, all the

time? I'd be concerned about him being too ketotic if they were always up at

160..... I always felt like they could be even higher than I realized if the

sticks could measure that high. Does he show any symptoms when ketones are

really dark? Lethargic? Cranky?

I would not be terribly worried about the fluid amounts unless you're seeing him

with very high ketones all the time..... and he starts refusing to eat or drink.

Then you could be looking at borderline dehydration and be hovering close to

getting into a mess with that..... especially during the hot weather of summer.

Katera would tend to refuse to drink when she was overly ketotic..... which

happened frequently and easily with her. We had to keep lowering and lowering

her ratio. Toward the end, she was making 80 to 160 ketones all the time at only

a 2:1 ratio.

Calories...... I'd think you're fine unless you see him losing weight. Calorie

restriction is actually part of the seizure control picture.... so you are

better off setting them low and watching his weight carefully. However, our

clinic says they see the best control in kids that are on the skinny side

(compared to their height).... at around the 25th percentile. We kept trying to

get Katera's weight down because she started the diet at above the 50th

percentile.

Another thing I would say you could do to fine tune, if he was eating regular

food, would be cutting out all grain-based carbs and only using veggie

sources..... but obviously that isn't in the picture here. I'm not familiar

with the formulas, so can't offer any insight on that.

Sorry to hear you're dealing with these breakthrough clusters. It's hard to know

whether coming off the diet would make things better or worse. I know that

dilemma..... don't envy you right now. It's always such a tough call. I know

we've had enough med nightmares to have made me not want to go down that road

again but " never say never " is my motto..... much as I hate to admit it.

Don't know if this is any help..... that's all I can think of.

Patti

Calculating the diet...

Hi all...I'm looking for input on my calculations. Our dietician feels

we've fine tuned as much as we can, but I'm not so sure. 's been

having seizures (clusters of myoclonics) upon waking in the morning and from

naps. Here's his current stats, so you know what we're working with:

3:1 ratio

Ketones high 80-160

5 yrs old

40.5 inches tall (about 6th percentile) and 40.5 lbs or 18.37 kg (50th

percentile)

Calories are currently at 810 and protein at 18.82 per day.

After going through the Ketogenic Diet book (3rd edition) I made some new

calculations and would love it if you all would double check my numbers and

give me feedback.

CALORIES:

I used table 8-1 on page 120 even though it only goes up to 4 yrs old. Is

there another source for 5 yr olds??

Anyway I came up with:

85 x .55 = 46.75

46.75 x 18.37 kg = 859 calories

Question: I know 75% of RDA is too high for 's activity level, so I

used 55%. How do the rest of you determine activity level? doesn't

walk or even crawl, but we frequently pattern him through crawling and take

him in the pool where he does a lot of kicking...other than that he's just

working on holding his head and trunk up and trying to do some reaching.

PROTEIN:

I calculated 1.1 gm per kg (18.37) which is 20.2 grams.

Question: Based on 's height do you think this is too high/low/just

right? Pre diet (3 yrs ago) his height and weight were both in the 50th

percentile, but now height is in the 6th. Does this indicate anything?

FLUIDS:

I used the table on page 123.

800 ml + 40 ml/kg

800 + 735 = 1535

1535 x 80% = 1228

Question: is on RCF version of the diet. He has 4 bottles of

formula/water per day which gives him about 1000 mls...other than that he

sips a little more water or has a koolaid popsicle but not enough to bring

him up to 1228. He's not dehydrated, but could too little fluid affect the

diet? Did I calculate the 1228 correctly?

Any other ideas?? We're about ready to give up on the diet, but our little

keppra trial a few months ago reminded me of all the nasty side effects of

meds. I'm tempted to just do nothing a see where we stand.

Thanks for listening and any help would be greatly appreciated!

Judy, mom to

[Guest guest]

Judy,

We had a great dietician and I always let her guide me when doing the basic diet

calculations, then did all the meals myself on the mealplanner program. The few

times I set off on my own adjusting calories and protein amounts, I usually

ended up being wrong and making everything worse.

I was concerned about Katera's growth because she started out on the short side

and had not grown at all in the first year of the diet so I thought it made

sense to increase her protein. She had initially been set at .97 gms per kilo,

which is pretty standard for most kids on the diet (Katera was 4 when she

started)...... but I increased it on my own up to 1.2 gms per kilo. In the long

run, this really did nothing but get us into a stickier mess with breakthrough

seizures. I will have to go hunting for the post I've saved on the reasoning

behind it because I just can't remember right now. I'll hunt later and send it

over. Anyway, the dietician explained to me that it's simply being in a state of

ketosis that impedes growth...... the extra protein will not help and may

hinder. I'd rather see him get the extra carb than protein at this point....

after being on the diet that long. Does he stay in ketosis solidly, all the

time? I'd be concerned about him being too ketotic if they were always up at

160..... I always felt like they could be even higher than I realized if the

sticks could measure that high. Does he show any symptoms when ketones are

really dark? Lethargic? Cranky?

I would not be terribly worried about the fluid amounts unless you're seeing him

with very high ketones all the time..... and he starts refusing to eat or drink.

Then you could be looking at borderline dehydration and be hovering close to

getting into a mess with that..... especially during the hot weather of summer.

Katera would tend to refuse to drink when she was overly ketotic..... which

happened frequently and easily with her. We had to keep lowering and lowering

her ratio. Toward the end, she was making 80 to 160 ketones all the time at only

a 2:1 ratio.

Calories...... I'd think you're fine unless you see him losing weight. Calorie

restriction is actually part of the seizure control picture.... so you are

better off setting them low and watching his weight carefully. However, our

clinic says they see the best control in kids that are on the skinny side

(compared to their height).... at around the 25th percentile. We kept trying to

get Katera's weight down because she started the diet at above the 50th

percentile.

Another thing I would say you could do to fine tune, if he was eating regular

food, would be cutting out all grain-based carbs and only using veggie

sources..... but obviously that isn't in the picture here. I'm not familiar

with the formulas, so can't offer any insight on that.

Sorry to hear you're dealing with these breakthrough clusters. It's hard to know

whether coming off the diet would make things better or worse. I know that

dilemma..... don't envy you right now. It's always such a tough call. I know

we've had enough med nightmares to have made me not want to go down that road

again but " never say never " is my motto..... much as I hate to admit it.

Don't know if this is any help..... that's all I can think of.

Patti

Calculating the diet...

Hi all...I'm looking for input on my calculations. Our dietician feels

we've fine tuned as much as we can, but I'm not so sure. 's been

having seizures (clusters of myoclonics) upon waking in the morning and from

naps. Here's his current stats, so you know what we're working with:

3:1 ratio

Ketones high 80-160

5 yrs old

40.5 inches tall (about 6th percentile) and 40.5 lbs or 18.37 kg (50th

percentile)

Calories are currently at 810 and protein at 18.82 per day.

After going through the Ketogenic Diet book (3rd edition) I made some new

calculations and would love it if you all would double check my numbers and

give me feedback.

CALORIES:

I used table 8-1 on page 120 even though it only goes up to 4 yrs old. Is

there another source for 5 yr olds??

Anyway I came up with:

85 x .55 = 46.75

46.75 x 18.37 kg = 859 calories

Question: I know 75% of RDA is too high for 's activity level, so I

used 55%. How do the rest of you determine activity level? doesn't

walk or even crawl, but we frequently pattern him through crawling and take

him in the pool where he does a lot of kicking...other than that he's just

working on holding his head and trunk up and trying to do some reaching.

PROTEIN:

I calculated 1.1 gm per kg (18.37) which is 20.2 grams.

Question: Based on 's height do you think this is too high/low/just

right? Pre diet (3 yrs ago) his height and weight were both in the 50th

percentile, but now height is in the 6th. Does this indicate anything?

FLUIDS:

I used the table on page 123.

800 ml + 40 ml/kg

800 + 735 = 1535

1535 x 80% = 1228

Question: is on RCF version of the diet. He has 4 bottles of

formula/water per day which gives him about 1000 mls...other than that he

sips a little more water or has a koolaid popsicle but not enough to bring

him up to 1228. He's not dehydrated, but could too little fluid affect the

diet? Did I calculate the 1228 correctly?

Any other ideas?? We're about ready to give up on the diet, but our little

keppra trial a few months ago reminded me of all the nasty side effects of

meds. I'm tempted to just do nothing a see where we stand.

Thanks for listening and any help would be greatly appreciated!

Judy, mom to

[Guest guest]

Page 131 has the complete table for initial calorie levels. As you say,

these are averages and have to be modified for individual

characteristics including activity level. To fine tune, you have to add

or decrease calories in small increments to get the best result; ideally

you want to be at ideal weight for height. Too little weight may mean

running out of fat to burn between meals and too much may mean that

ketones don't get high enough.

With 65 kcal per kg, you get 18 x 65 = 1170 calories per day. Then you

would decrease it for activity level a bit further.

Getting accurate weights is the most important thing and keeping records

to see trends over time.

His weight seems good at 50th percentile, and calories are quite low,

but maybe he is running out of fat and needs a bit more or he needs

snacks during the day.

For protein, I know that with such low calories you are going to have

trouble getting in enough protein. 1.1 is the number I get as well. Most

kids apparently don't grow much on the diet.

For fluids you don't use 80 percent. That is already in the table. You

would get 1535. Or you can use 1 ml per calorie. This would give 810 ml

at his current calorie level. You have a big range to choose from. As

you say if he is not dehydrated, he is okay. Going lower can get you

into trouble with constipation, kidney stones, etc.

With those low calories, you really need to have good and adequate

vitamin and mineral supplements!

Other than that it is mostly trial and error.

Bill

Judy Lee wrote:

> Hi all...I'm looking for input on my calculations. Our dietician feels

> we've fine tuned as much as we can, but I'm not so sure. 's been

> having seizures (clusters of myoclonics) upon waking in the morning and from

> naps. Here's his current stats, so you know what we're working with:

> 3:1 ratio

> Ketones high 80-160

> 5 yrs old

> 40.5 inches tall (about 6th percentile) and 40.5 lbs or 18.37 kg (50th

> percentile)

> Calories are currently at 810 and protein at 18.82 per day.

>

> After going through the Ketogenic Diet book (3rd edition) I made some new

> calculations and would love it if you all would double check my numbers and

> give me feedback.

>

> CALORIES:

> I used table 8-1 on page 120 even though it only goes up to 4 yrs old. Is

> there another source for 5 yr olds??

> Anyway I came up with:

> 85 x .55 = 46.75

> 46.75 x 18.37 kg = 859 calories

> Question: I know 75% of RDA is too high for 's activity level, so I

> used 55%. How do the rest of you determine activity level? doesn't

> walk or even crawl, but we frequently pattern him through crawling and take

> him in the pool where he does a lot of kicking...other than that he's just

> working on holding his head and trunk up and trying to do some reaching.

> PROTEIN:

> I calculated 1.1 gm per kg (18.37) which is 20.2 grams.

> Question: Based on 's height do you think this is too high/low/just

> right? Pre diet (3 yrs ago) his height and weight were both in the 50th

> percentile, but now height is in the 6th. Does this indicate anything?

> FLUIDS:

> I used the table on page 123.

> 800 ml + 40 ml/kg

> 800 + 735 = 1535

> 1535 x 80% = 1228

> Question: is on RCF version of the diet. He has 4 bottles of

> formula/water per day which gives him about 1000 mls...other than that he

> sips a little more water or has a koolaid popsicle but not enough to bring

> him up to 1228. He's not dehydrated, but could too little fluid affect the

> diet? Did I calculate the 1228 correctly?ogroups.com

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

Page 131 has the complete table for initial calorie levels. As you say,

these are averages and have to be modified for individual

characteristics including activity level. To fine tune, you have to add

or decrease calories in small increments to get the best result; ideally

you want to be at ideal weight for height. Too little weight may mean

running out of fat to burn between meals and too much may mean that

ketones don't get high enough.

With 65 kcal per kg, you get 18 x 65 = 1170 calories per day. Then you

would decrease it for activity level a bit further.

Getting accurate weights is the most important thing and keeping records

to see trends over time.

His weight seems good at 50th percentile, and calories are quite low,

but maybe he is running out of fat and needs a bit more or he needs

snacks during the day.

For protein, I know that with such low calories you are going to have

trouble getting in enough protein. 1.1 is the number I get as well. Most

kids apparently don't grow much on the diet.

For fluids you don't use 80 percent. That is already in the table. You

would get 1535. Or you can use 1 ml per calorie. This would give 810 ml

at his current calorie level. You have a big range to choose from. As

you say if he is not dehydrated, he is okay. Going lower can get you

into trouble with constipation, kidney stones, etc.

With those low calories, you really need to have good and adequate

vitamin and mineral supplements!

Other than that it is mostly trial and error.

Bill

Judy Lee wrote:

> Hi all...I'm looking for input on my calculations. Our dietician feels

> we've fine tuned as much as we can, but I'm not so sure. 's been

> having seizures (clusters of myoclonics) upon waking in the morning and from

> naps. Here's his current stats, so you know what we're working with:

> 3:1 ratio

> Ketones high 80-160

> 5 yrs old

> 40.5 inches tall (about 6th percentile) and 40.5 lbs or 18.37 kg (50th

> percentile)

> Calories are currently at 810 and protein at 18.82 per day.

>

> After going through the Ketogenic Diet book (3rd edition) I made some new

> calculations and would love it if you all would double check my numbers and

> give me feedback.

>

> CALORIES:

> I used table 8-1 on page 120 even though it only goes up to 4 yrs old. Is

> there another source for 5 yr olds??

> Anyway I came up with:

> 85 x .55 = 46.75

> 46.75 x 18.37 kg = 859 calories

> Question: I know 75% of RDA is too high for 's activity level, so I

> used 55%. How do the rest of you determine activity level? doesn't

> walk or even crawl, but we frequently pattern him through crawling and take

> him in the pool where he does a lot of kicking...other than that he's just

> working on holding his head and trunk up and trying to do some reaching.

> PROTEIN:

> I calculated 1.1 gm per kg (18.37) which is 20.2 grams.

> Question: Based on 's height do you think this is too high/low/just

> right? Pre diet (3 yrs ago) his height and weight were both in the 50th

> percentile, but now height is in the 6th. Does this indicate anything?

> FLUIDS:

> I used the table on page 123.

> 800 ml + 40 ml/kg

> 800 + 735 = 1535

> 1535 x 80% = 1228

> Question: is on RCF version of the diet. He has 4 bottles of

> formula/water per day which gives him about 1000 mls...other than that he

> sips a little more water or has a koolaid popsicle but not enough to bring

> him up to 1228. He's not dehydrated, but could too little fluid affect the

> diet? Did I calculate the 1228 correctly?ogroups.com

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

Page 131 has the complete table for initial calorie levels. As you say,

these are averages and have to be modified for individual

characteristics including activity level. To fine tune, you have to add

or decrease calories in small increments to get the best result; ideally

you want to be at ideal weight for height. Too little weight may mean

running out of fat to burn between meals and too much may mean that

ketones don't get high enough.

With 65 kcal per kg, you get 18 x 65 = 1170 calories per day. Then you

would decrease it for activity level a bit further.

Getting accurate weights is the most important thing and keeping records

to see trends over time.

His weight seems good at 50th percentile, and calories are quite low,

but maybe he is running out of fat and needs a bit more or he needs

snacks during the day.

For protein, I know that with such low calories you are going to have

trouble getting in enough protein. 1.1 is the number I get as well. Most

kids apparently don't grow much on the diet.

For fluids you don't use 80 percent. That is already in the table. You

would get 1535. Or you can use 1 ml per calorie. This would give 810 ml

at his current calorie level. You have a big range to choose from. As

you say if he is not dehydrated, he is okay. Going lower can get you

into trouble with constipation, kidney stones, etc.

With those low calories, you really need to have good and adequate

vitamin and mineral supplements!

Other than that it is mostly trial and error.

Bill

Judy Lee wrote:

> Hi all...I'm looking for input on my calculations. Our dietician feels

> we've fine tuned as much as we can, but I'm not so sure. 's been

> having seizures (clusters of myoclonics) upon waking in the morning and from

> naps. Here's his current stats, so you know what we're working with:

> 3:1 ratio

> Ketones high 80-160

> 5 yrs old

> 40.5 inches tall (about 6th percentile) and 40.5 lbs or 18.37 kg (50th

> percentile)

> Calories are currently at 810 and protein at 18.82 per day.

>

> After going through the Ketogenic Diet book (3rd edition) I made some new

> calculations and would love it if you all would double check my numbers and

> give me feedback.

>

> CALORIES:

> I used table 8-1 on page 120 even though it only goes up to 4 yrs old. Is

> there another source for 5 yr olds??

> Anyway I came up with:

> 85 x .55 = 46.75

> 46.75 x 18.37 kg = 859 calories

> Question: I know 75% of RDA is too high for 's activity level, so I

> used 55%. How do the rest of you determine activity level? doesn't

> walk or even crawl, but we frequently pattern him through crawling and take

> him in the pool where he does a lot of kicking...other than that he's just

> working on holding his head and trunk up and trying to do some reaching.

> PROTEIN:

> I calculated 1.1 gm per kg (18.37) which is 20.2 grams.

> Question: Based on 's height do you think this is too high/low/just

> right? Pre diet (3 yrs ago) his height and weight were both in the 50th

> percentile, but now height is in the 6th. Does this indicate anything?

> FLUIDS:

> I used the table on page 123.

> 800 ml + 40 ml/kg

> 800 + 735 = 1535

> 1535 x 80% = 1228

> Question: is on RCF version of the diet. He has 4 bottles of

> formula/water per day which gives him about 1000 mls...other than that he

> sips a little more water or has a koolaid popsicle but not enough to bring

> him up to 1228. He's not dehydrated, but could too little fluid affect the

> diet? Did I calculate the 1228 correctly?ogroups.com

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

Patti and Bill...thanks for your input. I don't normally venture into

adjusting calories and protein myself, but with the increase in seizures, I

figure we have a little room to experiment. I know the diet and being in

ketosis slows growth, but I wasn't sure how much of the slow down is due to

the overall diet vs. how much is due to the protein possibly being off. I

don't want to mess anything up though, so I'll ask our dietician. Right now

I'm just questioning everything! Is weight gain the only indicator of what

the calories should be? His calories have been the same for a year now.

She's never really asked me about his activity level, so I'm not sure how

she's determining calories. What about the ratio? What typically indicates

a need to change. Our dietician had on a high ratio for two years,

until I told her I thought he was too ketotic (strip turned dark within a

couple seconds), panty breathing, etc and even then she was slow to change

it, so we just did it ourselves. His ketones fluctuate between moderate and

high. His ketones seem to be the opposite of everyone else, they're high in

the early morning, become moderate in the afternoon, and then get high again

in the evening. Ketones don't appear to be directly correlated...he's had

bad clusters when his ketones are high and bad ones when they're moderate.

He has four meals a day that are pretty evenly spaced out, so I'm not sure

whats going on. He does eat solids as well as the formula, so I would love

to be able to give him a little more carbs (carbs are from veggies/fruits

and not grains). I'm just reaching for straws...I think there is always

some fine tuning that can be done so I wasn't happy to hear our dietician

say we've maximized the diet!

Thanks again

Judy, mom to , 5 yrs old

[Guest guest]

Patti and Bill...thanks for your input. I don't normally venture into

adjusting calories and protein myself, but with the increase in seizures, I

figure we have a little room to experiment. I know the diet and being in

ketosis slows growth, but I wasn't sure how much of the slow down is due to

the overall diet vs. how much is due to the protein possibly being off. I

don't want to mess anything up though, so I'll ask our dietician. Right now

I'm just questioning everything! Is weight gain the only indicator of what

the calories should be? His calories have been the same for a year now.

She's never really asked me about his activity level, so I'm not sure how

she's determining calories. What about the ratio? What typically indicates

a need to change. Our dietician had on a high ratio for two years,

until I told her I thought he was too ketotic (strip turned dark within a

couple seconds), panty breathing, etc and even then she was slow to change

it, so we just did it ourselves. His ketones fluctuate between moderate and

high. His ketones seem to be the opposite of everyone else, they're high in

the early morning, become moderate in the afternoon, and then get high again

in the evening. Ketones don't appear to be directly correlated...he's had

bad clusters when his ketones are high and bad ones when they're moderate.

He has four meals a day that are pretty evenly spaced out, so I'm not sure

whats going on. He does eat solids as well as the formula, so I would love

to be able to give him a little more carbs (carbs are from veggies/fruits

and not grains). I'm just reaching for straws...I think there is always

some fine tuning that can be done so I wasn't happy to hear our dietician

say we've maximized the diet!

Thanks again

Judy, mom to , 5 yrs old

[Guest guest]

Patti and Bill...thanks for your input. I don't normally venture into

adjusting calories and protein myself, but with the increase in seizures, I

figure we have a little room to experiment. I know the diet and being in

ketosis slows growth, but I wasn't sure how much of the slow down is due to

the overall diet vs. how much is due to the protein possibly being off. I

don't want to mess anything up though, so I'll ask our dietician. Right now

I'm just questioning everything! Is weight gain the only indicator of what

the calories should be? His calories have been the same for a year now.

She's never really asked me about his activity level, so I'm not sure how

she's determining calories. What about the ratio? What typically indicates

a need to change. Our dietician had on a high ratio for two years,

until I told her I thought he was too ketotic (strip turned dark within a

couple seconds), panty breathing, etc and even then she was slow to change

it, so we just did it ourselves. His ketones fluctuate between moderate and

high. His ketones seem to be the opposite of everyone else, they're high in

the early morning, become moderate in the afternoon, and then get high again

in the evening. Ketones don't appear to be directly correlated...he's had

bad clusters when his ketones are high and bad ones when they're moderate.

He has four meals a day that are pretty evenly spaced out, so I'm not sure

whats going on. He does eat solids as well as the formula, so I would love

to be able to give him a little more carbs (carbs are from veggies/fruits

and not grains). I'm just reaching for straws...I think there is always

some fine tuning that can be done so I wasn't happy to hear our dietician

say we've maximized the diet!

Thanks again

Judy, mom to , 5 yrs old

[Guest guest]

Judy,

<<Is weight gain the only indicator of what

the calories should be?>>

This is how our clinic approached it..... since it is soooo hard to really

determine how many calories each child is really using. You can only estimate

and then check weight frequently.

<<What about the ratio? What typically indicates

a need to change.>>

Exactly the things you mention..... those signs of being overly ketotic. Katera

would get simply MISERABLE.... irritable, flushed face, lethargic, strong

acetone smell on her breath, refuse to eat or drink, keto strips turning

instantly dark. She would easily get dehydrated when her ratio was too high, as

well.

<<His ketones fluctuate between moderate and

high. His ketones seem to be the opposite of everyone else, they're high in

the early morning, become moderate in the afternoon, and then get high again

in the evening.>>

I would suspect that any fluctuation you see in urine ketones could be more to

do with how much he's had to drink in the few hours just prior.... his actual

blood ketones are probably staying very high. That's just my guess.

Patti

[Guest guest]

Dieticians may have a hidden motive. It takes a lot of work to change

the ratio and all the meals. They aren't given enough resources to do

the work they are given.

Sure, there is always room for fine tuning. The problem is that it is

often guesswork, lots and room for making things better or worse. Keep

good records and wait for a week or more to see any changes.

Bill

Judy Lee wrote:

> Patti and Bill...thanks for your input. I don't normally venture into

> adjusting calories and protein myself, but with the increase in seizures, I

> figure we have a little room to experiment. I know the diet and being in

> ketosis slows growth, but I wasn't sure how much of the slow down is due to

> the overall diet vs. how much is due to the protein possibly being off. I

> don't want to mess anything up though, so I'll ask our dietician. Right now

> I'm just questioning everything! Is weight gain the only indicator of what

> the calories should be? His calories have been the same for a year now.

> She's never really asked me about his activity level, so I'm not sure how

> she's determining calories. What about the ratio? What typically indicates

> a need to change. Our dietician had on a high ratio for two years,

> until I told her I thought he was too ketotic (strip turned dark within a

> couple seconds), panty breathing, etc and even then she was slow to change

> it, so we just did it ourselves. His ketones fluctuate between moderate and

> high. His ketones seem to be the opposite of everyone else, they're high in

> the early morning, become moderate in the afternoon, and then get high again

> in the evening. Ketones don't appear to be directly correlated...he's had

> bad clusters when his ketones are high and bad ones when they're moderate.

> He has four meals a day that are pretty evenly spaced out, so I'm not sure

> whats going on. He does eat solids as well as the formula, so I would love

> to be able to give him a little more carbs (carbs are from veggies/fruits

> and not grains). I'm just reaching for straws...I think there is always

> some fine tuning that can be done so I wasn't happy to hear our dietician

> say we've maximized the diet!

> Thanks again

> Judy, mom to , 5 yrs old

>

>

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