Re: Are we inadvertently sabotaging the diet?

[Guest guest]

I know were your minds at, if that helps how you feel. I'm walking

around with my thoughts on the diet too. Picking it apart looking

for Gillian's loop hole. Sometimes I feel like I'm going crazy going

over it and over it, I can't stop thinking about it. Especially when

I keep hearing Gillians poor little face hitting the floor. She's

crawling now and when she has a siezure in that position she just

collapses on her face, its makes me sick. I know the sound and that

the screaming will fallow after the silence. We keep her on the

carpet as much as possible but she still makes her way to the kitchen

floor sometimes and it never fails that's were she'll have one. It

just makes me want to scream, " STOP IT!! SHE'S MY BABY!! JUST MAKE

THEM STOP!! " There just so much pain and greif in me I don't know

what to do with it all. I'm rambling....sorry....not on topic at

all. Sorry I have no words of wisdom for you....no answers.

Liz

> Here's a thought that's been nagging me terribly lately. If

anybody

> has any knowledge or theories on this, please let me know. First I

> will give some background of what we've been though to get me to

this

> point of theorizing...

>

> Lucas, as I've mentioned before, no longer receives any

> carbohydrate. He began the diet 9/00 at 3 months of age, at a 3:1

> ratio and a much higher calorie amount (can't recall now what it

was)

> without a fast, working into the full strength formula over 3

days.

> Breastmilk was used as his carb source. He showed ketones quickly,

> and the docs were thrilled and surprised. However, he had trouble

> staying ketotic. His ratio was increased, and obviously that meant

> less breastmilk/carb. They ended up removing all carbohydrates

from

> his diet. All meds were carb-free. Still difficulty with

> fluctuating ketones. Eventually the dietician figured that he was

> getting too many calories, after I kept insisting that I thought

that

> was our problem. Lucas is severely hypotonic, and we discovered

over

> time that basically he needs his calories so restricted to avoid

> weight gain, that it really cuts his protein allotment down to

nearly

> WHO standards rather than RDA.

>

> Right now, we sit at a 4.25:1 ratio and 397 calories, basically

> because we had several periods of decent seizure control at this

> recipe and no other. Ketones still fluctuate, but have shown some

> improvement since I adjusted his feedings so that he no longer gets

a

> continuous pump feeding overnite, but 5 bolus feeds instead.

>

> What I am wondering and theorizing is this (and it's not the first

> time): are we somehow inadvertently sabotaging the diet by not

> giving SOME carb? It seems to me that the main underlying

difference

> between the other kids on the liquid diet who have good ketone

levels

> and control is that they get a carb allotment in accordance with

> their ratio & calorie intake, and we do not. If carbs are not

> necessary to ketone levels and seizure management, why are they

> calculated at all? I mean, the calories could certainly be put to

> more protein, or whatever, as Liz mentioned. I can see why kids

who

> are on a " regular " food keto diet get them - variety, veggies,

etc.,

> but on the liquid diet, carbs are empty calories, right? So why

are

> they there, unless they serve some sort of overall purpose in diet

> maintenance?

>

> I might be just overthinking or overtired or both, but I am really

> wondering if we NEED some carbs in Lukey's diet to make it

> effective. I have posed this question to the dietician but gotten

> nowhere. I don't think she thinks about the hows & whys of the

diet -

> just makes calculations.

>

> This has become an issue for me lately because of the ketocal. I

> might like to give it a try, but it has carbs, and also when I

> calculated the protein amount at Lukey's calorie level, it's too

low,

> so we might not be able to do it. I can't help but wonder if the

> different formulation might help his ketosis. I am determined to

> find a way to make this diet work better for us. I don't want to

> throw his current formula out the window yet if there might a way

to

> improve it - i.e. adding carbs if they're needed. But then again,

I

> don't want to possibly overlook or delay some other option

(ketocal)

> that might work better (different fat source, etc.).

>

> Anybody have thoughts on this? My mind's spinning and I hate it

when

> that happens!

>

> Heidi

[Guest guest]

Heidi -- I'm not dietician or nutritionist. . .but

carbs are not empty calories. Carbohydrate is

necessary for several body functions and conversions,

especially related to energy. The body needs protein,

fat AND carbohydrate. I've always been a bit alarmed

that you have NO carbs -- carbs are only empty

calories when they are processed sugar. I have no

idea how this might be affecting the diet or Lucas'

control -- but I think you need to add some carbs for

his overall health. It is true that you should always

max out on his protein intake -- but the rest should

be made up in carbs. JMHO.--D

--- heididoe@... wrote:

> Here's a thought that's been nagging me terribly

> lately. If anybody

> has any knowledge or theories on this, please let me

> know. First I

> will give some background of what we've been though

> to get me to this

> point of theorizing...

>

> Lucas, as I've mentioned before, no longer receives

> any

> carbohydrate. He began the diet 9/00 at 3 months of

> age, at a 3:1

> ratio and a much higher calorie amount (can't recall

> now what it was)

> without a fast, working into the full strength

> formula over 3 days.

> Breastmilk was used as his carb source. He showed

> ketones quickly,

> and the docs were thrilled and surprised. However,

> he had trouble

> staying ketotic. His ratio was increased, and

> obviously that meant

> less breastmilk/carb. They ended up removing all

> carbohydrates from

> his diet. All meds were carb-free. Still

> difficulty with

> fluctuating ketones. Eventually the dietician

> figured that he was

> getting too many calories, after I kept insisting

> that I thought that

> was our problem. Lucas is severely hypotonic, and

> we discovered over

> time that basically he needs his calories so

> restricted to avoid

> weight gain, that it really cuts his protein

> allotment down to nearly

> WHO standards rather than RDA.

>

> Right now, we sit at a 4.25:1 ratio and 397

> calories, basically

> because we had several periods of decent seizure

> control at this

> recipe and no other. Ketones still fluctuate, but

> have shown some

> improvement since I adjusted his feedings so that he

> no longer gets a

> continuous pump feeding overnite, but 5 bolus feeds

> instead.

>

> What I am wondering and theorizing is this (and it's

> not the first

> time): are we somehow inadvertently sabotaging the

> diet by not

> giving SOME carb? It seems to me that the main

> underlying difference

> between the other kids on the liquid diet who have

> good ketone levels

> and control is that they get a carb allotment in

> accordance with

> their ratio & calorie intake, and we do not. If

> carbs are not

> necessary to ketone levels and seizure management,

> why are they

> calculated at all? I mean, the calories could

> certainly be put to

> more protein, or whatever, as Liz mentioned. I can

> see why kids who

> are on a " regular " food keto diet get them -

> variety, veggies, etc.,

> but on the liquid diet, carbs are empty calories,

> right? So why are

> they there, unless they serve some sort of overall

> purpose in diet

> maintenance?

>

> I might be just overthinking or overtired or both,

> but I am really

> wondering if we NEED some carbs in Lukey's diet to

> make it

> effective. I have posed this question to the

> dietician but gotten

> nowhere. I don't think she thinks about the hows &

> whys of the diet -

> just makes calculations.

>

> This has become an issue for me lately because of

> the ketocal. I

> might like to give it a try, but it has carbs, and

> also when I

> calculated the protein amount at Lukey's calorie

> level, it's too low,

> so we might not be able to do it. I can't help but

> wonder if the

> different formulation might help his ketosis. I am

> determined to

> find a way to make this diet work better for us. I

> don't want to

> throw his current formula out the window yet if

> there might a way to

> improve it - i.e. adding carbs if they're needed.

> But then again, I

> don't want to possibly overlook or delay some other

> option (ketocal)

> that might work better (different fat source, etc.).

>

> Anybody have thoughts on this? My mind's spinning

> and I hate it when

> that happens!

>

> Heidi

>

>

>

>

>

>

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. " -- Mother Theresa

__________________________________________________

[Guest guest]

Heidi,

yes, I think some carbs are necessary. The reason is that the brain needs

quick glucose to function. If it doesn't get it through food, the body will

turn fat or muscle into glucose, which will cause lower ketones and higher

blood glucose= loss of seizure control.

For a while I had Marissa on a 5:1 ratio because I could not figure out why

her ketones kept dropping. Turns out her ratio was too high to allow for

enough carbs and her body was making glucose.

Love

Jen- mommy to Marissa (4, cerebral palsy, intractible seizures, keto kid

since 11/99, med free since 6/00), (2), Jade (almost 3 months)

[Guest guest]

I agree that carbs are not just empty calories, a small amount are essential

for certain body functions, but when the carbs aren't there the body will

convert protien to carb to do the trick. Of course, another way to

look at it is if he is at WHO minimums for protien but is converting some

of that to carbs, he ain't even really getting the minimum amount of protien

DeEtte Person wrote:

Heidi -- I'm not dietician or nutritionist. .

..but

carbs are not empty calories. Carbohydrate is

necessary for several body functions and conversions,

especially related to energy. The body needs protein,

fat AND carbohydrate. I've always been a bit alarmed

that you have NO carbs -- carbs are only empty

calories when they are processed sugar. I have no

idea how this might be affecting the diet or Lucas'

control -- but I think you need to add some carbs for

his overall health. It is true that you should always

max out on his protein intake -- but the rest should

be made up in carbs. JMHO.--D

--- heididoe@... wrote:

> Here's a thought that's been nagging me terribly

> lately. If anybody

> has any knowledge or theories on this, please let me

> know. First I

> will give some background of what we've been though

> to get me to this

> point of theorizing...

>

> Lucas, as I've mentioned before, no longer receives

> any

> carbohydrate. He began the diet 9/00 at 3 months of

> age, at a 3:1

> ratio and a much higher calorie amount (can't recall

> now what it was)

> without a fast, working into the full strength

> formula over 3 days.

> Breastmilk was used as his carb source. He showed

> ketones quickly,

> and the docs were thrilled and surprised. However,

> he had trouble

> staying ketotic. His ratio was increased, and

> obviously that meant

> less breastmilk/carb. They ended up removing all

> carbohydrates from

> his diet. All meds were carb-free. Still

> difficulty with

> fluctuating ketones. Eventually the dietician

> figured that he was

> getting too many calories, after I kept insisting

> that I thought that

> was our problem. Lucas is severely hypotonic, and

> we discovered over

> time that basically he needs his calories so

> restricted to avoid

> weight gain, that it really cuts his protein

> allotment down to nearly

> WHO standards rather than RDA.

>

> Right now, we sit at a 4.25:1 ratio and 397

> calories, basically

> because we had several periods of decent seizure

> control at this

> recipe and no other. Ketones still fluctuate, but

> have shown some

> improvement since I adjusted his feedings so that he

> no longer gets a

> continuous pump feeding overnite, but 5 bolus feeds

> instead.

>

> What I am wondering and theorizing is this (and it's

> not the first

> time): are we somehow inadvertently sabotaging the

> diet by not

> giving SOME carb? It seems to me that the main

> underlying difference

> between the other kids on the liquid diet who have

> good ketone levels

> and control is that they get a carb allotment in

> accordance with

> their ratio & calorie intake, and we do not. If

> carbs are not

> necessary to ketone levels and seizure management,

> why are they

> calculated at all? I mean, the calories could

> certainly be put to

> more protein, or whatever, as Liz mentioned. I can

> see why kids who

> are on a "regular" food keto diet get them -

> variety, veggies, etc.,

> but on the liquid diet, carbs are empty calories,

> right? So why are

> they there, unless they serve some sort of overall

> purpose in diet

> maintenance?

>

> I might be just overthinking or overtired or both,

> but I am really

> wondering if we NEED some carbs in Lukey's diet to

> make it

> effective. I have posed this question to the

> dietician but gotten

> nowhere. I don't think she thinks about the hows &

> whys of the diet -

> just makes calculations.

>

> This has become an issue for me lately because of

> the ketocal. I

> might like to give it a try, but it has carbs, and

> also when I

> calculated the protein amount at Lukey's calorie

> level, it's too low,

> so we might not be able to do it. I can't help but

> wonder if the

> different formulation might help his ketosis. I am

> determined to

> find a way to make this diet work better for us. I

> don't want to

> throw his current formula out the window yet if

> there might a way to

> improve it - i.e. adding carbs if they're needed.

> But then again, I

> don't want to possibly overlook or delay some other

> option (ketocal)

> that might work better (different fat source, etc.).

>

> Anybody have thoughts on this? My mind's spinning

> and I hate it when

> that happens!

>

> Heidi

>

>

>

>

>

>

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures

greatly reduced) and (, 4), sdale, AZ

"I know God would never give me more than I can handle. . .I just

wish he didn't trust me so much." -- Mother Theresa

__________________________________________________

[Guest guest]

Hi Heidi,

I don't know if I can help you out here- I don't know that much about the liquid feedings.

But I do know from our own experience, always tended to do better with a *little* carb in her diet. She did best when her ketones were at lg. 80.

Whenever she went to lg. 160 on the keto stix, her seizures increased. Sometimes she even did really well at med. 40. ( I hope I'm remembering the numbers right).

This might be the cause, but maybe some other parents who are doing the liquid diet would know best on this one.

I'm sorry not to be a bigger help, I just seem to remember doing a little better on some carbs!

Take care, and best of luck,

Kandy

11

Idaho

[Guest guest]

DeEtte,

Thanks for the reply - I agree. I am going to have " another " talk

with our dietician tomorrow - assuming I can reach her.

Sorry about the empty calorie thing - where I meant " empty " calories

is in tube feedings with polycose - I assume polycose is just a carb

but contains no nutritional value? We've never had it, but according

to the RCF can, it just adds calories & carbohydrate - no nutrition.

I think it's Kathy who adds baby food carrots as a carb source to

their liquid diet - if we can add carbs, I think I will ask about

that, because the breastmilk I had frozen is now expired and thrown

away. I'd rather add something like the carrots to give vitamins

than polycose if there's no good stuff in polycose.

We now have a tiny amount of carb by adding felbatol and the very

small amount in his UnicapM - but I think the amount is so minute

that it doesn't help. But his ketones seem better with even that

little bit - go figure. I can't help but wonder if even that tiny

amount of carb is proving my point that carbs must be needed in some

fashion by the diet. I wish I knew a specialist of some sort to

ask. We've seen an endocrinologist (who doesn't seem fazed in the

least about our lack of carb - he spent more time looking at Lukey's

skull and seeing his lack of head growth, and said that obviously

they aren't conducive to Lucas surviving much longer - nice, huh?),

and my uncle is an endo, but isn't familiar with the diet other than

basic knowledge of it, unfortunately. Of course, even the docs who

are studying this don't have a firm grasp of what makes it work and

why, so I don't know if anyone will have the answer, but sometimes I

think it's us parents who are going to come across the answer for

them someday!

Thanks again for the reply - it reinforces my convictions that we

have to adjust something somewhere!

Heidi

> Heidi -- I'm not dietician or nutritionist. . .but

> carbs are not empty calories.

-- carbs are only empty

> calories when they are processed sugar.

[Guest guest]

Heidi,

Marissa is on a 4:1, but her ketones are still a little unstable. I'm

thinking of dropping the ratio again. She once maintained large ketones at

1.9:1!

Love

Jen

[Guest guest]

Jen,

Thanks for the reply. What ratio is Marissa on now?

Heidi

> For a while I had Marissa on a 5:1 ratio because I could not figure

out why

> her ketones kept dropping