Re: meal planner survey >dreamerofluna

[Guest guest]

None??? Yikes... so, did you have to figure your first meals out on

your own? The learning curve would have been much steeper for me if

I hadn't had the dietician sitting next to me at her computer for the

first few!

Cammie

>

>

> WOW...our dietian didn't give us any meals!!!

>

[Guest guest]

While we were in the hospital she made the first two meals. Then I

made the rest and she sat beside me at the computer. But I wasn't

sent home with any so I have kind of been doing it by ear. I pray I

am doing it right. But she said I was really good at it.So who

knows. Yes, he is still seizing but then again he went off the

depakote cold turkey..750mg.

> >

> >

> > WOW...our dietian didn't give us any meals!!!

> >

[Guest guest]

While we were in the hospital she made the first two meals. Then I

made the rest and she sat beside me at the computer. But I wasn't

sent home with any so I have kind of been doing it by ear. I pray I

am doing it right. But she said I was really good at it.So who

knows. Yes, he is still seizing but then again he went off the

depakote cold turkey..750mg.

> >

> >

> > WOW...our dietian didn't give us any meals!!!

> >

[Guest guest]

While we were in the hospital she made the first two meals. Then I

made the rest and she sat beside me at the computer. But I wasn't

sent home with any so I have kind of been doing it by ear. I pray I

am doing it right. But she said I was really good at it.So who

knows. Yes, he is still seizing but then again he went off the

depakote cold turkey..750mg.

> >

> >

> > WOW...our dietian didn't give us any meals!!!

> >

[Guest guest]

Now I'm even more curious... if you calculated meals with your

dietician, I wonder why she didn't print them out and have you take

them home. We created a " keto binder " with all of our info in it--

all of our instructions, handouts, ketone charts, ht./wt., diet

prescription and changes,meals, etc. etc.

Are you using a planner at home? If not and you are estimating the

amounts of foods in meals, I would be worried that it's not precise

enough. We weighed to the gram--exactly. Some dieticians have you

weigh to tenth of a gram (especially with younger kids).

We also dropped Depakote (1000mg/day) when we started the diet. It

was the BEST thing we ever did. We didn't have withdrawal seizures,

but I have to say that our daughter made ketones very easily and

quickly, so I'm sure that helped her. Our team advocates dropping

meds at the start, especially the ones that can really goof up the

diet. Most of their patients are off all meds within the first

month. Based on their experience and that of other teams they

collaborate with, the diet works best alone, and they think that the

diet gives some " coverage " to get rid of the meds at the start--as

the body is just getting used to using fat as the primary energy

source. Even if the diet isn't going to work, you will know that

sooner without meds on board.

Are your child's seizures better since you started the diet? Have

you noticed any positive differences in your child without the

Depakote?

Cammie

> > >

> > >

> > > WOW...our dietian didn't give us any meals!!!

> > >

[Guest guest]

Now I'm even more curious... if you calculated meals with your

dietician, I wonder why she didn't print them out and have you take

them home. We created a " keto binder " with all of our info in it--

all of our instructions, handouts, ketone charts, ht./wt., diet

prescription and changes,meals, etc. etc.

Are you using a planner at home? If not and you are estimating the

amounts of foods in meals, I would be worried that it's not precise

enough. We weighed to the gram--exactly. Some dieticians have you

weigh to tenth of a gram (especially with younger kids).

We also dropped Depakote (1000mg/day) when we started the diet. It

was the BEST thing we ever did. We didn't have withdrawal seizures,

but I have to say that our daughter made ketones very easily and

quickly, so I'm sure that helped her. Our team advocates dropping

meds at the start, especially the ones that can really goof up the

diet. Most of their patients are off all meds within the first

month. Based on their experience and that of other teams they

collaborate with, the diet works best alone, and they think that the

diet gives some " coverage " to get rid of the meds at the start--as

the body is just getting used to using fat as the primary energy

source. Even if the diet isn't going to work, you will know that

sooner without meds on board.

Are your child's seizures better since you started the diet? Have

you noticed any positive differences in your child without the

Depakote?

Cammie

> > >

> > >

> > > WOW...our dietian didn't give us any meals!!!

> > >

[Guest guest]

Now I'm even more curious... if you calculated meals with your

dietician, I wonder why she didn't print them out and have you take

them home. We created a " keto binder " with all of our info in it--

all of our instructions, handouts, ketone charts, ht./wt., diet

prescription and changes,meals, etc. etc.

Are you using a planner at home? If not and you are estimating the

amounts of foods in meals, I would be worried that it's not precise

enough. We weighed to the gram--exactly. Some dieticians have you

weigh to tenth of a gram (especially with younger kids).

We also dropped Depakote (1000mg/day) when we started the diet. It

was the BEST thing we ever did. We didn't have withdrawal seizures,

but I have to say that our daughter made ketones very easily and

quickly, so I'm sure that helped her. Our team advocates dropping

meds at the start, especially the ones that can really goof up the

diet. Most of their patients are off all meds within the first

month. Based on their experience and that of other teams they

collaborate with, the diet works best alone, and they think that the

diet gives some " coverage " to get rid of the meds at the start--as

the body is just getting used to using fat as the primary energy

source. Even if the diet isn't going to work, you will know that

sooner without meds on board.

Are your child's seizures better since you started the diet? Have

you noticed any positive differences in your child without the

Depakote?

Cammie

> > >

> > >

> > > WOW...our dietian didn't give us any meals!!!

> > >

[Guest guest]

I do use a planner on my computer. Jordan is on 1030cal. She put him

on a little extra because he is so tiny to start with. He gets 30oz

of water a day. And he is on a 4 to 1 ratio with 15 grams of protein

a day. He has stayed at 160 the entire time for ketones. I ALWAYS

make sure when I do the meals that the plan is exactly a 4 to 1

ratio.

During initation (fasting) Jordan only had 1 seizure late that

night. This is VERY unusal for him. Then he had 2 weak seizures the

next day then we dropped the depakote and he has been having about 4-

5 seizures a day since.

> > > >

> > > >

> > > > WOW...our dietian didn't give us any meals!!!

> > > >

[Guest guest]

I do use a planner on my computer. Jordan is on 1030cal. She put him

on a little extra because he is so tiny to start with. He gets 30oz

of water a day. And he is on a 4 to 1 ratio with 15 grams of protein

a day. He has stayed at 160 the entire time for ketones. I ALWAYS

make sure when I do the meals that the plan is exactly a 4 to 1

ratio.

During initation (fasting) Jordan only had 1 seizure late that

night. This is VERY unusal for him. Then he had 2 weak seizures the

next day then we dropped the depakote and he has been having about 4-

5 seizures a day since.

> > > >

> > > >

> > > > WOW...our dietian didn't give us any meals!!!

> > > >

[Guest guest]

Is 4-5 seizures per day less than Jordan was having prior to starting

the diet or less? Was Depakote the only med he was on?

Cammie

> > > > >

> > > > >

> > > > > WOW...our dietian didn't give us any meals!!!

> > > > >

[Guest guest]

Is 4-5 seizures per day less than Jordan was having prior to starting

the diet or less? Was Depakote the only med he was on?

Cammie

> > > > >

> > > > >

> > > > > WOW...our dietian didn't give us any meals!!!

> > > > >

[Guest guest]

Sometimes intervening with an emergency type med like diastat for 12-24 hrs,

perhaps even 48 hrs if required to keep things 'calm', will work to break nasty

med withdrawal cycles. This is an option you might want to look at if it carries

on for much longer, and if this doesn't work, like if he started seizing again

each time it wore off, then look at putting some depakote back. We have escaped

having to put meds back after reductions quite a few times in the past using

this method, as sometimes it is just a 'seizure begetting more seizures' from

the withdrawal causing them, and if you can break that cycle for long enough,

the withdrawal can be 'beaten'.

If you do try this though, you have to be careful not to replace one addiction

with another, we never went longer than the 48 hrs of emergency med just in case

then started withdrawing from that one instead.

He is now intolerant of all the benzodiazepines though, (after being put on

high dose regular benzos for a long time) so this will no longer be an option

here, but might be something for you to try there,

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

From: dreamerofluna

Yes, he is still seizing but then again he went off the

depakote cold turkey..750mg.

[Guest guest]

Sometimes intervening with an emergency type med like diastat for 12-24 hrs,

perhaps even 48 hrs if required to keep things 'calm', will work to break nasty

med withdrawal cycles. This is an option you might want to look at if it carries

on for much longer, and if this doesn't work, like if he started seizing again

each time it wore off, then look at putting some depakote back. We have escaped

having to put meds back after reductions quite a few times in the past using

this method, as sometimes it is just a 'seizure begetting more seizures' from

the withdrawal causing them, and if you can break that cycle for long enough,

the withdrawal can be 'beaten'.

If you do try this though, you have to be careful not to replace one addiction

with another, we never went longer than the 48 hrs of emergency med just in case

then started withdrawing from that one instead.

He is now intolerant of all the benzodiazepines though, (after being put on

high dose regular benzos for a long time) so this will no longer be an option

here, but might be something for you to try there,

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

From: dreamerofluna

Yes, he is still seizing but then again he went off the

depakote cold turkey..750mg.

[Guest guest]

Sometimes intervening with an emergency type med like diastat for 12-24 hrs,

perhaps even 48 hrs if required to keep things 'calm', will work to break nasty

med withdrawal cycles. This is an option you might want to look at if it carries

on for much longer, and if this doesn't work, like if he started seizing again

each time it wore off, then look at putting some depakote back. We have escaped

having to put meds back after reductions quite a few times in the past using

this method, as sometimes it is just a 'seizure begetting more seizures' from

the withdrawal causing them, and if you can break that cycle for long enough,

the withdrawal can be 'beaten'.

If you do try this though, you have to be careful not to replace one addiction

with another, we never went longer than the 48 hrs of emergency med just in case

then started withdrawing from that one instead.

He is now intolerant of all the benzodiazepines though, (after being put on

high dose regular benzos for a long time) so this will no longer be an option

here, but might be something for you to try there,

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

From: dreamerofluna

Yes, he is still seizing but then again he went off the

depakote cold turkey..750mg.

[Guest guest]

He was on Depakene and Keppra before the diet. Keppra now only. He

was having 6 to 8 a day before we saw some *control* with the

depakene. Then he was having about 4 a day and that was the most

control we had. Now with the cut off of the Depakote he had 4

yesterday and only 2 today so far....keeping fingers crossed!! Two

is EXTREMLY good for him!

> > > > > >

> > > > > >

> > > > > > WOW...our dietian didn't give us any meals!!!

> > > > > >

[Guest guest]

Hooray for a better day today! Makes me think some of the recent

seizures WERE withdrawal. Hopefully, things will continue to

improve. Is Jordan eating a little better? If so, that should be

helping, too.

Cammie

> >

> > Is 4-5 seizures per day less than Jordan was having prior to

> starting

> > the diet or less? Was Depakote the only med he was on?

> >

> > Cammie

[Guest guest]

He ended up having 3 total yesterday...still the best yet for him!!

So we are happy. And he has had 2 today so far but they are so tiny

that if you weren't holding him you wouldn't even notice!! WOOHOO

usually they make him stagger backwards. I know that this diet is at

least doing something. At any rate we have better control than we

did on 1000mg of Keppra and 750mg of Depakene. They also cut the

Keppra in half so he is on 500mg now. Yes, he is definatly eating

better!! He cleans his plate!

> > >

> > > Is 4-5 seizures per day less than Jordan was having prior to

> > starting

> > > the diet or less? Was Depakote the only med he was on?

> > >

> > > Cammie