Re: Just got back from hospital-

[Guest guest]

Hi ,

I haven't got any experience of switching from Atkins to keto, but I guess you

would just jump right in with the stricter keto ratio and meals on your

mealplanner. He will prob have more glucose on board than he would have had on

keto, so it may take a while for those levels to come down a bit, that would

prob be the only advantage to fasting, to deplete any glycogen stores, but I

think it will happen soon enough as you make the Atkins/keto transition without

having to go to those measures.

Do you still need help with cals etc? If so, if you want to post his age and

(ideal) weight, I'll give it a go. Do you know what sort of ratio you want to

try for?

----- Original Message -----

From: lloydandleslie@...

My heart tells me that the only true hope that my little boy has is to get

off this Atkins diet and go back on the keto diet. I logged on to the

Charlie

Foundation last night and read Jim Abrams story about the drugs and remind

myself that the diet is not as bad as the alternative. is

regresssing daily as we speak. He is getting weaker, speech extremely

slurred and

can barely use his hands. It is a slow deterioration that we saw pre diet

the

last go around. I remind myself of how far he has come and if it

weren'tfor

the diet, I don not know where we would be.

So, my question to you is, if we go back on keto diet as a last time try,

do you think since he is on Atkins now and in ketosis that I could just get

my mealplanner out and start again or would we have to go back in and start

over. I just don't see the need to put him in the hospital again.. He

would

be very welcoming of the fruit and other things he got on the keto diet.

He

already gets cream and butter with every meal and as snacks.

What do you think? I don't know how many calories, protien etc. Can

someone help me until we find a dietician here?

Thanks

[Guest guest]

,

Thanks a bunch. He is 6 (almost 7) weighs 45 lbs and 45 inches. Like a square.

Ha Ha.

I have my mealplanner but wasn't sure about cals and protein etc.

Thanks a whole big bunch

[Guest guest]

THANK YOU THANK YOU THANK YOU!

Actually, was on 2:1 most of the time on keto becuase he gets

highly ketotic. I now wonder if it had something to do with him always being on

the depakote. We'll probably start there and then go up if we need to be he

had really good control at 2:1 and 4:1 just made him a mess. He is back on

depakote only and gets 375 mg a day. Once we're smooth (crossing fingers I

am)I want to get him off all the meds this time. If we're doing the diet

again, I need to know for myself that we tried to get him off all the drugs. I

wonder if he was off, would he need a higher ratio??

Again, thanks for your help. I want to start playing around with some

meals. He has a colonoscopy and endoscopy next week and we see the neuro and

then

we'll decide but I would rather go back to the diet which we know can work

than do brain surgery or drugs again.

How is doing with his wean?? Boy, those last few were tough for us

to wean. WHEW!! Hang in there.

[Guest guest]

K, so if we use 7 yrs old, he needs min 1 gm prt per kg of body weight

(switches from 1.1 to 1 at age 7 if you do it strictly by the book).

45 pounds is about 20.4 kilos, so mebbe round it off to 21? If so, per day he

would get 21 gms prt, and cals for a 7-10 yr old are 55-60 per kg, so between

1122 and 1224 cals per day, depending on his activity level. If he is about

average, and we took the middle road, that would be about 1170 cals per day.

I'm not sure if I have worked out correctly where he sits as far as ideal

height and weight go - but I think he is currently 10th percentile for both

height and weight? So I guess in proportion? Has his growth been fairly steady,

like is this where you want him to be at?

If this all sounds about right, depending on activity level and ideal weight,

then on say 1170 cals on a 4:1 ratio he would get per day - 21 gms prt, 117 gms

fat and 8.3 gms carb.

On a 3.5:1 ratio it would be 21 gms prt, 115.4 gms fat and 12 gms carb, and a

3:1 ratio would be 21 gms prt, 113.2 gms fat and 16.7 gms carb.

I suppose that since he is well used to producing ketones, it might pay to

start lower and see how he goes seizure wise, and gradually increase the ratio

up, depending on how he goes?

Hope that is worked out correctly, holler if anything doesn't sound right

----- Original Message -----

From: lloydandleslie@...

,

Thanks a bunch. He is 6 (almost 7) weighs 45 lbs and 45 inches. Like a

square. Ha Ha.

I have my mealplanner but wasn't sure about cals and protein etc.

Thanks a whole big bunch

[Guest guest]

was on carnitor when he was on a high dose of depakote back 4

years ago. He was 2 and on 750 mg. Yes. I'm serious. He became toxic on it

so we went down. His labs showed he needed the carnitor. Now, he is fine.

He isn't on it.

takes the 125 mg sprinkles. He gets 125 mg in am and 250 at

bedtime (about 8 oclock). I think that has a honeymoon reaction

where when we increase it, the seziures diminish for a week or so. Then, they

are back.

My goal is to get him on the keto diet again and off meds and of course,

seizure gone. We can always aim high.

I really hope that your wean goes well and you are able to get down on the

meds. We never got past 125 mg on the depakote. Sz came back after that and

we got scared and went back up. I think now, I would ride it out and see

what happened. The lower the meds the better so I hope it helps .

Lots of luck to you and again, thanks for your help.

[Guest guest]

was on carnitor when he was on a high dose of depakote back 4

years ago. He was 2 and on 750 mg. Yes. I'm serious. He became toxic on it

so we went down. His labs showed he needed the carnitor. Now, he is fine.

He isn't on it.

takes the 125 mg sprinkles. He gets 125 mg in am and 250 at

bedtime (about 8 oclock). I think that has a honeymoon reaction

where when we increase it, the seziures diminish for a week or so. Then, they

are back.

My goal is to get him on the keto diet again and off meds and of course,

seizure gone. We can always aim high.

I really hope that your wean goes well and you are able to get down on the

meds. We never got past 125 mg on the depakote. Sz came back after that and

we got scared and went back up. I think now, I would ride it out and see

what happened. The lower the meds the better so I hope it helps .

Lots of luck to you and again, thanks for your help.

[Guest guest]

was on carnitor when he was on a high dose of depakote back 4

years ago. He was 2 and on 750 mg. Yes. I'm serious. He became toxic on it

so we went down. His labs showed he needed the carnitor. Now, he is fine.

He isn't on it.

takes the 125 mg sprinkles. He gets 125 mg in am and 250 at

bedtime (about 8 oclock). I think that has a honeymoon reaction

where when we increase it, the seziures diminish for a week or so. Then, they

are back.

My goal is to get him on the keto diet again and off meds and of course,

seizure gone. We can always aim high.

I really hope that your wean goes well and you are able to get down on the

meds. We never got past 125 mg on the depakote. Sz came back after that and

we got scared and went back up. I think now, I would ride it out and see

what happened. The lower the meds the better so I hope it helps .

Lots of luck to you and again, thanks for your help.

[Guest guest]

Reducing depakote with in the past has traditionally made his ketones

higher, not lower, but I think with him this may be tied in with the carnitine

issue. Like, less dep, less competition for available L-carnitine, which allows

fat to be metabolised more efficiently.

The other theory is that depakote with it's fatty acid mechanism can actually

enhance/strengthen the diet, (which may be what happens with if he

has gone too high in the past) as for every paper you read on the two competing

with each other and inhibiting ketone production, there is another one written

to give the opp scenario. V frustrating, but I guess like with anything epilepsy

and med related, what is the case for one kiddie, is the complete opp for

another.

I can't remember - was/is on a carnitine supplement?

How do you spread out that 375 mgs of depakote? As you prob know, we had to go

to 3 times a day dosing with when his level was increased to 500 mgs late

last yr, including one dose at midnight. We'll soon find out whether the

midnight dose has been part of his sleep seizure control - our neuro doubts it,

he thinks the dep has been a bit of a spare wheel for a long time now, but the

other consultant we saw suspects that may still need a low dose.

Because of the carnitine issue though, we are giving it a go, and then I

s'pose we will have our answer.

Our original weaning plan was to ditch the midnight dose first and bring him

back to twice daily dosing till it was all weaned, but I have had a change of

heart on that one, and decided to reduce evenly over all the doses instead to

try and maintain steadyish blood levels. So the midnight dose stays for now,

down to 125 mgs from the first reduction, and we reduced his 5 pm dose 2 days

ago down to the same level. Next'll be the morn dose, and so on...

We have had him down to 200 mgs in the past without tooooo much drama, but

then he became addicted to the horrendous levels used on infusions in PICU last

yr, and he only got back down to 500 mgs before we left the hospital. My gut

said back then to stop it altogether, but his control was just too tenous to be

playing around with much at all.

Hoping like anything that leaving him stable on the previous regime for as

long as we did (9 mths) will give us more leeway for the lower dose reductions

this time round, cos yes, previously, the lower down we used to get, the longer

the fallout used to last. Ugh.

----- Original Message -----

From: lloydandleslie@...

THANK YOU THANK YOU THANK YOU!

Actually, was on 2:1 most of the time on keto becuase he gets

highly ketotic. I now wonder if it had something to do with him always being

on

the depakote. We'll probably start there and then go up if we need to be

he

had really good control at 2:1 and 4:1 just made him a mess. He is back on

depakote only and gets 375 mg a day. Once we're smooth (crossing fingers I

am)I want to get him off all the meds this time. If we're doing the diet

again, I need to know for myself that we tried to get him off all the

drugs. I

wonder if he was off, would he need a higher ratio??

Again, thanks for your help. I want to start playing around with some

meals. He has a colonoscopy and endoscopy next week and we see the neuro

and then

we'll decide but I would rather go back to the diet which we know can work

than do brain surgery or drugs again.

How is doing with his wean?? Boy, those last few were tough for us

to wean. WHEW!! Hang in there.

[Guest guest]

Reducing depakote with in the past has traditionally made his ketones

higher, not lower, but I think with him this may be tied in with the carnitine

issue. Like, less dep, less competition for available L-carnitine, which allows

fat to be metabolised more efficiently.

The other theory is that depakote with it's fatty acid mechanism can actually

enhance/strengthen the diet, (which may be what happens with if he

has gone too high in the past) as for every paper you read on the two competing

with each other and inhibiting ketone production, there is another one written

to give the opp scenario. V frustrating, but I guess like with anything epilepsy

and med related, what is the case for one kiddie, is the complete opp for

another.

I can't remember - was/is on a carnitine supplement?

How do you spread out that 375 mgs of depakote? As you prob know, we had to go

to 3 times a day dosing with when his level was increased to 500 mgs late

last yr, including one dose at midnight. We'll soon find out whether the

midnight dose has been part of his sleep seizure control - our neuro doubts it,

he thinks the dep has been a bit of a spare wheel for a long time now, but the

other consultant we saw suspects that may still need a low dose.

Because of the carnitine issue though, we are giving it a go, and then I

s'pose we will have our answer.

Our original weaning plan was to ditch the midnight dose first and bring him

back to twice daily dosing till it was all weaned, but I have had a change of

heart on that one, and decided to reduce evenly over all the doses instead to

try and maintain steadyish blood levels. So the midnight dose stays for now,

down to 125 mgs from the first reduction, and we reduced his 5 pm dose 2 days

ago down to the same level. Next'll be the morn dose, and so on...

We have had him down to 200 mgs in the past without tooooo much drama, but

then he became addicted to the horrendous levels used on infusions in PICU last

yr, and he only got back down to 500 mgs before we left the hospital. My gut

said back then to stop it altogether, but his control was just too tenous to be

playing around with much at all.

Hoping like anything that leaving him stable on the previous regime for as

long as we did (9 mths) will give us more leeway for the lower dose reductions

this time round, cos yes, previously, the lower down we used to get, the longer

the fallout used to last. Ugh.

----- Original Message -----

From: lloydandleslie@...

THANK YOU THANK YOU THANK YOU!

Actually, was on 2:1 most of the time on keto becuase he gets

highly ketotic. I now wonder if it had something to do with him always being

on

the depakote. We'll probably start there and then go up if we need to be

he

had really good control at 2:1 and 4:1 just made him a mess. He is back on

depakote only and gets 375 mg a day. Once we're smooth (crossing fingers I

am)I want to get him off all the meds this time. If we're doing the diet

again, I need to know for myself that we tried to get him off all the

drugs. I

wonder if he was off, would he need a higher ratio??

Again, thanks for your help. I want to start playing around with some

meals. He has a colonoscopy and endoscopy next week and we see the neuro

and then

we'll decide but I would rather go back to the diet which we know can work

than do brain surgery or drugs again.

How is doing with his wean?? Boy, those last few were tough for us

to wean. WHEW!! Hang in there.

[Guest guest]

Reducing depakote with in the past has traditionally made his ketones

higher, not lower, but I think with him this may be tied in with the carnitine

issue. Like, less dep, less competition for available L-carnitine, which allows

fat to be metabolised more efficiently.

The other theory is that depakote with it's fatty acid mechanism can actually

enhance/strengthen the diet, (which may be what happens with if he

has gone too high in the past) as for every paper you read on the two competing

with each other and inhibiting ketone production, there is another one written

to give the opp scenario. V frustrating, but I guess like with anything epilepsy

and med related, what is the case for one kiddie, is the complete opp for

another.

I can't remember - was/is on a carnitine supplement?

How do you spread out that 375 mgs of depakote? As you prob know, we had to go

to 3 times a day dosing with when his level was increased to 500 mgs late

last yr, including one dose at midnight. We'll soon find out whether the

midnight dose has been part of his sleep seizure control - our neuro doubts it,

he thinks the dep has been a bit of a spare wheel for a long time now, but the

other consultant we saw suspects that may still need a low dose.

Because of the carnitine issue though, we are giving it a go, and then I

s'pose we will have our answer.

Our original weaning plan was to ditch the midnight dose first and bring him

back to twice daily dosing till it was all weaned, but I have had a change of

heart on that one, and decided to reduce evenly over all the doses instead to

try and maintain steadyish blood levels. So the midnight dose stays for now,

down to 125 mgs from the first reduction, and we reduced his 5 pm dose 2 days

ago down to the same level. Next'll be the morn dose, and so on...

We have had him down to 200 mgs in the past without tooooo much drama, but

then he became addicted to the horrendous levels used on infusions in PICU last

yr, and he only got back down to 500 mgs before we left the hospital. My gut

said back then to stop it altogether, but his control was just too tenous to be

playing around with much at all.

Hoping like anything that leaving him stable on the previous regime for as

long as we did (9 mths) will give us more leeway for the lower dose reductions

this time round, cos yes, previously, the lower down we used to get, the longer

the fallout used to last. Ugh.

----- Original Message -----

From: lloydandleslie@...

THANK YOU THANK YOU THANK YOU!

Actually, was on 2:1 most of the time on keto becuase he gets

highly ketotic. I now wonder if it had something to do with him always being

on

the depakote. We'll probably start there and then go up if we need to be

he

had really good control at 2:1 and 4:1 just made him a mess. He is back on

depakote only and gets 375 mg a day. Once we're smooth (crossing fingers I

am)I want to get him off all the meds this time. If we're doing the diet

again, I need to know for myself that we tried to get him off all the

drugs. I

wonder if he was off, would he need a higher ratio??

Again, thanks for your help. I want to start playing around with some

meals. He has a colonoscopy and endoscopy next week and we see the neuro

and then

we'll decide but I would rather go back to the diet which we know can work

than do brain surgery or drugs again.

How is doing with his wean?? Boy, those last few were tough for us

to wean. WHEW!! Hang in there.

[Guest guest]

was on 1000 mgs dep at age 3, along with lamictal, clobazam and

zarontin, so yes, I know where you are coming from - the toxic level of meds

back then we were pouring into him make me shudder thinking about it.

We have since found out that anything above 500 mgs dep makes him seize as

each dose peaks, so God knows what that awful cocktail along with the high dep

dose was doing to him. Well actually, in hindsight, we do know, ugh.

Shall we patent 20/20 hindsight

----- Original Message -----

From: lloydandleslie@...

was on carnitor when he was on a high dose of depakote back 4

years ago. He was 2 and on 750 mg. Yes. I'm serious. He became toxic on

it

so we went down. His labs showed he needed the carnitor. Now, he is

fine.

He isn't on it.

takes the 125 mg sprinkles. He gets 125 mg in am and 250 at

bedtime (about 8 oclock). I think that has a honeymoon

reaction

where when we increase it, the seziures diminish for a week or so. Then,

they

are back.

My goal is to get him on the keto diet again and off meds and of course,

seizure gone. We can always aim high.

I really hope that your wean goes well and you are able to get down on the

meds. We never got past 125 mg on the depakote. Sz came back after that

and

we got scared and went back up. I think now, I would ride it out and see

what happened. The lower the meds the better so I hope it helps .

Lots of luck to you and again, thanks for your help.