Re: Success with lower ketones?

[Guest guest]

We were one of those too. Hristopher actually started the diet twice on 4:1

and didn't tolerate the diet or have sz control until we went down to 2.5

ratio. He had large ketones (darkest on stick) all of the time on that ratio

and we even went down to 2.1 for a long time and still the dark ketones.

For us, I think it was the depakote and that it makes the ketones higher or

him more acidic. I wonder if without the depakote would he need a higher

ratio?

This is by far not the most common but was a reality for us and I know of

others on the list over the years with the same issue. Not a bad issue to have

really.

LEslie

[Guest guest]

We were one of those too. Hristopher actually started the diet twice on 4:1

and didn't tolerate the diet or have sz control until we went down to 2.5

ratio. He had large ketones (darkest on stick) all of the time on that ratio

and we even went down to 2.1 for a long time and still the dark ketones.

For us, I think it was the depakote and that it makes the ketones higher or

him more acidic. I wonder if without the depakote would he need a higher

ratio?

This is by far not the most common but was a reality for us and I know of

others on the list over the years with the same issue. Not a bad issue to have

really.

LEslie

[Guest guest]

We were one of those too. Hristopher actually started the diet twice on 4:1

and didn't tolerate the diet or have sz control until we went down to 2.5

ratio. He had large ketones (darkest on stick) all of the time on that ratio

and we even went down to 2.1 for a long time and still the dark ketones.

For us, I think it was the depakote and that it makes the ketones higher or

him more acidic. I wonder if without the depakote would he need a higher

ratio?

This is by far not the most common but was a reality for us and I know of

others on the list over the years with the same issue. Not a bad issue to have

really.

LEslie

[Guest guest]

You have to find the best place for your child for calories, ratio, and

ketones. It might have been the lower ketones or it might have been the

lower calories as butter has a lot of calories, apples not so much. It

is all trial and error. So yes, if you have an idea or a clue like you

have seen, then follow up on it for a few weeks. Usually one week

minimum, two weeks normally to test diet changes. 4:1 to 3.5:1 is a

relatively minor change to make.

Bill

dreamerofluna wrote:

>

> Is this possible? Does anyone else have success with lower ketones?

> Jordan's are always the hightest possible on the stick. But today he

> didn't eat all of his butter and stole a few bites off of an illegal

> apple!! So needless to say his ketones were REALLY low like barely a

> trace. Well.....he only had one seizure until they went back up to

> large. Was this just a fluke? Help from my dietian is non-existant

> so ya'll are basically all I have.....please help!! Right now he is

> on a 4 to 1 ratio. If I were to lower his ratio to 3.5 to 1 how long

> before his ketones would drop? Thanks!! Any advice offered is great!

>

>

>

>

>

>

[Guest guest]

You have to find the best place for your child for calories, ratio, and

ketones. It might have been the lower ketones or it might have been the

lower calories as butter has a lot of calories, apples not so much. It

is all trial and error. So yes, if you have an idea or a clue like you

have seen, then follow up on it for a few weeks. Usually one week

minimum, two weeks normally to test diet changes. 4:1 to 3.5:1 is a

relatively minor change to make.

Bill

dreamerofluna wrote:

>

> Is this possible? Does anyone else have success with lower ketones?

> Jordan's are always the hightest possible on the stick. But today he

> didn't eat all of his butter and stole a few bites off of an illegal

> apple!! So needless to say his ketones were REALLY low like barely a

> trace. Well.....he only had one seizure until they went back up to

> large. Was this just a fluke? Help from my dietian is non-existant

> so ya'll are basically all I have.....please help!! Right now he is

> on a 4 to 1 ratio. If I were to lower his ratio to 3.5 to 1 how long

> before his ketones would drop? Thanks!! Any advice offered is great!

>

>

>

>

>

>

[Guest guest]

You have to find the best place for your child for calories, ratio, and

ketones. It might have been the lower ketones or it might have been the

lower calories as butter has a lot of calories, apples not so much. It

is all trial and error. So yes, if you have an idea or a clue like you

have seen, then follow up on it for a few weeks. Usually one week

minimum, two weeks normally to test diet changes. 4:1 to 3.5:1 is a

relatively minor change to make.

Bill

dreamerofluna wrote:

>

> Is this possible? Does anyone else have success with lower ketones?

> Jordan's are always the hightest possible on the stick. But today he

> didn't eat all of his butter and stole a few bites off of an illegal

> apple!! So needless to say his ketones were REALLY low like barely a

> trace. Well.....he only had one seizure until they went back up to

> large. Was this just a fluke? Help from my dietian is non-existant

> so ya'll are basically all I have.....please help!! Right now he is

> on a 4 to 1 ratio. If I were to lower his ratio to 3.5 to 1 how long

> before his ketones would drop? Thanks!! Any advice offered is great!

>

>

>

>

>

>

[Guest guest]

Jordan isn't on Depakote though...LOL. I am always second guessing

myself on this thing wondering what will work and what won't.

> We were one of those too. Hristopher actually started the diet

twice on 4:1

> and didn't tolerate the diet or have sz control until we went

down to 2.5

> ratio. He had large ketones (darkest on stick) all of the time

on that ratio

> and we even went down to 2.1 for a long time and still the dark

ketones.

>

> For us, I think it was the depakote and that it makes the ketones

higher or

> him more acidic. I wonder if without the depakote would he need a

higher

> ratio?

>

> This is by far not the most common but was a reality for us and I

know of

> others on the list over the years with the same issue. Not a bad

issue to have

> really.

>

>

> LEslie

>

>

>

[Guest guest]

Great thank you!!

> >

> > Is this possible? Does anyone else have success with lower

ketones?

> > Jordan's are always the hightest possible on the stick. But

today he

> > didn't eat all of his butter and stole a few bites off of an

illegal

> > apple!! So needless to say his ketones were REALLY low like

barely a

> > trace. Well.....he only had one seizure until they went back up

to

> > large. Was this just a fluke? Help from my dietian is non-

existant

> > so ya'll are basically all I have.....please help!! Right now he

is

> > on a 4 to 1 ratio. If I were to lower his ratio to 3.5 to 1 how

long

> > before his ketones would drop? Thanks!! Any advice offered is

great!

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi there!

My son Isaac was always dark purple on the sticks too -- darker than

16. He was having more seizures and had become tired and had some

vomitting too. As soon as I put those symptoms together for the Dr.

he suspected that Isaac was dehydrated. It turns out he was. Isaac

didn't like to drink straight water and in our neck of the woods

they are real purists and were not recommending any of the sugarless

drinks. However obviously dehydration is not acceptable. Now Isaac

drinks the " Carb Options " drink crystals that have Splenda. He

still doesn't drink as much as he is supposed to but seems to be

able to stay ahead of dehydration. His seizures improved and the

other symptoms went away. I certainly hadn't thought of

dehydration. It was a reminder to me that the diet really is a

medical treatment not to be taken lightly. (Dr. told me next visit

that Isaac's heart and respiration rates had been elevated by the

chronic dehydration)

Anyway I realize that this is kind of a late response to your post

and you probably have it all figured out already. I thought I'd

share though because you never know who is going through the same

thing at the same time.

PS Isaac (keto-kid since June/04) is doing well. Back on full dose

of VA with some seizures every day but still up walking, going to

school and HAPPY.

Blessings to all

Kathleen

>

> Is this possible? Does anyone else have success with lower

ketones?

> Jordan's are always the hightest possible on the stick. But today

he

> didn't eat all of his butter and stole a few bites off of an

illegal

> apple!! So needless to say his ketones were REALLY low like barely

a

> trace. Well.....he only had one seizure until they went back up to

> large. Was this just a fluke? Help from my dietian is non-existant

> so ya'll are basically all I have.....please help!! Right now he

is

> on a 4 to 1 ratio. If I were to lower his ratio to 3.5 to 1 how

long

> before his ketones would drop? Thanks!! Any advice offered is

great!

[Guest guest]

Thanks for your response. I think that is Jordan's problem!! We have

been giving him keto-koolaid ever since. He just won't drink plain

water either! I was barely getting 2 sippies in him a day. But now

the ketones are lower than they were..around 40 to 80 and still

seizing. I have noticed that they are much lighter the later the day

gets???

> >

> > Is this possible? Does anyone else have success with lower

> ketones?

> > Jordan's are always the hightest possible on the stick. But

today

> he

> > didn't eat all of his butter and stole a few bites off of an

> illegal

> > apple!! So needless to say his ketones were REALLY low like

barely

> a

> > trace. Well.....he only had one seizure until they went back up

to

> > large. Was this just a fluke? Help from my dietian is non-

existant

> > so ya'll are basically all I have.....please help!! Right now he

> is

> > on a 4 to 1 ratio. If I were to lower his ratio to 3.5 to 1 how

> long

> > before his ketones would drop? Thanks!! Any advice offered is

> great!

[Guest guest]

You might have to lower calories if ketones get lighter during the day.

It could mean that the extra calories are reducing ketones. You already

have a high ratio of 4:1. Unless there are errors in the calculations,

that is usually sufficient. How many calories are you using? Age?

Weight? Number of meals, etc.?

Bill

dreamerofluna wrote:

>

>

> Thanks for your response. I think that is Jordan's problem!! We have

> been giving him keto-koolaid ever since. He just won't drink plain

> water either! I was barely getting 2 sippies in him a day. But now

> the ketones are lower than they were..around 40 to 80 and still

> seizing. I have noticed that they are much lighter the later the day

> gets???

>

>

>>

>>>Is this possible? Does anyone else have success with lower

>>

>>ketones?

>>

>>>Jordan's are always the hightest possible on the stick. But

>>

> today

>

>>he

>>

>>>didn't eat all of his butter and stole a few bites off of an

>>

>>illegal

>>

>>>apple!! So needless to say his ketones were REALLY low like

>>

> barely

>

>>a

>>

>>>trace. Well.....he only had one seizure until they went back up

>>

> to

>

>>>large. Was this just a fluke? Help from my dietian is non-

>>

> existant

>

>>>so ya'll are basically all I have.....please help!! Right now he

>>

>>is

>>

>>>on a 4 to 1 ratio. If I were to lower his ratio to 3.5 to 1 how

>>

>>long

>>

>>>before his ketones would drop? Thanks!! Any advice offered is

>>

>>great!

>

>

>

>

>

>

>

[Guest guest]

Jordan is on 1030 calories with 15 grams of protein. He is 3 y/o and

weighs 27lbs. We currently do 4 meals a day.

> >>

> >>>Is this possible? Does anyone else have success with lower

> >>

> >>ketones?

> >>

> >>>Jordan's are always the hightest possible on the stick. But

> >>

> > today

> >

> >>he

> >>

> >>>didn't eat all of his butter and stole a few bites off of an

> >>

> >>illegal

> >>

> >>>apple!! So needless to say his ketones were REALLY low like

> >>

> > barely

> >

> >>a

> >>

> >>>trace. Well.....he only had one seizure until they went back up

> >>

> > to

> >

> >>>large. Was this just a fluke? Help from my dietian is non-

> >>

> > existant

> >

> >>>so ya'll are basically all I have.....please help!! Right now

he

> >>

> >>is

> >>

> >>>on a 4 to 1 ratio. If I were to lower his ratio to 3.5 to 1 how

> >>

> >>long

> >>

> >>>before his ketones would drop? Thanks!! Any advice offered is

> >>

> >>great!

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

That calorie level is high. Unless he is very active, it is well above

the recommended level of calories per day. For a 3 y/o at 12.3 kg, the

approximate calories would be 70x12.3= 861 calories. Is there a reason

for the higher calories? Were you getting weight loss or are you trying

to increase weight for a specific reason?

If you don't have a reason for higher calories you could recalculate at

a lower level or you could try cutting the lunch or dinner meal in half.

That would lower calories by about 130 calories a day. That would give

900 calories per day, closer to the recommended level. You could try

that for 4 days or so. If ketones are higher and seizures go down, it

might be an indication of fine tuning you need to do. If ketones go too

high and you see symptoms, you might have to give some apple juice to

temporarily lower them.

Hope that helps,

Bill

dreamerofluna wrote:

>

> Jordan is on 1030 calories with 15 grams of protein. He is 3 y/o and

> weighs 27lbs. We currently do 4 meals a day.

>

>

>

>>You might have to lower calories if ketones get lighter during the

>

> day.

>

>>It could mean that the extra calories are reducing ketones. You

>

> already

>

>>have a high ratio of 4:1. Unless there are errors in the

>

> calculations,

>

>>that is usually sufficient. How many calories are you using? Age?

>>Weight? Number of meals, etc.?

>>

>>Bill

[Guest guest]

She never really told me why she calculated the calories that high.

I guess he is active...LOL. aren't all 3 y/o's but I wouldn't say

that he is anything out of the ordinary. Maybe she was trying for

him to gain weight? He is pretty thin. So far, even in the hospital,

we haven't had any problems with the high ketones. He tolerates them

pretty well....but that is probably because they aren't high enough.

Thanks for the help Bill!

> >

> >>You might have to lower calories if ketones get lighter during

the

> >

> > day.

> >

> >>It could mean that the extra calories are reducing ketones. You

> >

> > already

> >

> >>have a high ratio of 4:1. Unless there are errors in the

> >

> > calculations,

> >

> >>that is usually sufficient. How many calories are you using?

Age?

> >>Weight? Number of meals, etc.?

> >>

> >>Bill

[Guest guest]

Hi!

It's Isaac's mum again. We got the lower ketones and more seizures

throughout the day after starting the drink crystals too. I wish

I'd thought to mention that. At first I thought it was the Splenda

and watered it down but soon realized that Isaac was just drinking

too much. So now I measure out what he is supposed to have in 24

hours and make sure he gets most of it. I still water down the

drink so that it is not so sweet that he wants to guzzle it but it

still tastes pretty good. His drinking just plain slowed down again

after a week or so though and I imagine that he went gung-ho at the

beginning because he was dehydrated. I'm glad we were patient

through the process because it really wasn't the food. It's so hard

for me not to be reactive and it seems that all seizure management

has to be done so methodically wether it's the diet or medications

or weathering an illness or...

Good Luck!

Kathleen

-- In ketogenic , " dreamerofluna "

wrote:

>

>

> Thanks for your response. I think that is Jordan's problem!! We

have

> been giving him keto-koolaid ever since. He just won't drink plain

> water either! I was barely getting 2 sippies in him a day. But now

> the ketones are lower than they were..around 40 to 80 and still

> seizing. I have noticed that they are much lighter the later the

day

> gets???

>

>

> > >

> > > Is this possible? Does anyone else have success with lower

> > ketones?

> > > Jordan's are always the hightest possible on the stick. But

> today

> > he

> > > didn't eat all of his butter and stole a few bites off of an

> > illegal

> > > apple!! So needless to say his ketones were REALLY low like

> barely

> > a

> > > trace. Well.....he only had one seizure until they went back

up

> to

> > > large. Was this just a fluke? Help from my dietian is non-

> existant

> > > so ya'll are basically all I have.....please help!! Right now

he

> > is

> > > on a 4 to 1 ratio. If I were to lower his ratio to 3.5 to 1

how

> > long

> > > before his ketones would drop? Thanks!! Any advice offered is

> > great!