Re: no results and losing hope

[Guest guest]

Are you using strict foods like no low carb products and no kool aid etc.

There are certain kids that are really sensitive to the foods even the keto

friendly foods. Just a thought. Sometimes you may want to post meals and have

some of the experts on it.

[Guest guest]

Are you using strict foods like no low carb products and no kool aid etc.

There are certain kids that are really sensitive to the foods even the keto

friendly foods. Just a thought. Sometimes you may want to post meals and have

some of the experts on it.

[Guest guest]

Are you using strict foods like no low carb products and no kool aid etc.

There are certain kids that are really sensitive to the foods even the keto

friendly foods. Just a thought. Sometimes you may want to post meals and have

some of the experts on it.

[Guest guest]

I know its rustrated and I'm sorry you are not getting the results so fast.

Hang in there and keep the faith.

mom to , 6, 2 years keto, now on Atkins after coming off

keto unsuccessfully

[Guest guest]

I know its rustrated and I'm sorry you are not getting the results so fast.

Hang in there and keep the faith.

mom to , 6, 2 years keto, now on Atkins after coming off

keto unsuccessfully

[Guest guest]

I know its rustrated and I'm sorry you are not getting the results so fast.

Hang in there and keep the faith.

mom to , 6, 2 years keto, now on Atkins after coming off

keto unsuccessfully

[Guest guest]

yes, im very strict with that...I am only using the recipes that the dietician

has made out for us and he gets only fruit2o and certain diet sodas to drink.

There are some carbs (very very low) in the foods that he has but they are

really minimal like 1 g here or there. I guess I just thought by now, even if

we didnt have complete seizure control, that we would see at least an

improvement in maybe how many but just like clockwork hes having them same as

pre-diet. I guess we just keep plugging away at it and see what happens with

our next visit...thanks for your input!

[Guest guest]

yes, im very strict with that...I am only using the recipes that the dietician

has made out for us and he gets only fruit2o and certain diet sodas to drink.

There are some carbs (very very low) in the foods that he has but they are

really minimal like 1 g here or there. I guess I just thought by now, even if

we didnt have complete seizure control, that we would see at least an

improvement in maybe how many but just like clockwork hes having them same as

pre-diet. I guess we just keep plugging away at it and see what happens with

our next visit...thanks for your input!

[Guest guest]

yes, im very strict with that...I am only using the recipes that the dietician

has made out for us and he gets only fruit2o and certain diet sodas to drink.

There are some carbs (very very low) in the foods that he has but they are

really minimal like 1 g here or there. I guess I just thought by now, even if

we didnt have complete seizure control, that we would see at least an

improvement in maybe how many but just like clockwork hes having them same as

pre-diet. I guess we just keep plugging away at it and see what happens with

our next visit...thanks for your input!

[Guest guest]

Two things - sorry if you answered this before - but is he on any drugs?

and have someone recheck dietican's calculations, dietican error does

happen

Tammy wrote:

> yes, im very strict with that...I am only using the recipes that the

> dietician has made out for us and he gets only fruit2o and certain

> diet sodas to drink. There are some carbs (very very low) in the

> foods that he has but they are really minimal like 1 g here or

> there. I guess I just thought by now, even if we didnt have complete

> seizure control, that we would see at least an improvement in maybe

> how many but just like clockwork hes having them same as pre-diet. I

> guess we just keep plugging away at it and see what happens with our

> next visit...thanks for your input!

>

>

[Guest guest]

Two things - sorry if you answered this before - but is he on any drugs?

and have someone recheck dietican's calculations, dietican error does

happen

Tammy wrote:

> yes, im very strict with that...I am only using the recipes that the

> dietician has made out for us and he gets only fruit2o and certain

> diet sodas to drink. There are some carbs (very very low) in the

> foods that he has but they are really minimal like 1 g here or

> there. I guess I just thought by now, even if we didnt have complete

> seizure control, that we would see at least an improvement in maybe

> how many but just like clockwork hes having them same as pre-diet. I

> guess we just keep plugging away at it and see what happens with our

> next visit...thanks for your input!

>

>

[Guest guest]

Two things - sorry if you answered this before - but is he on any drugs?

and have someone recheck dietican's calculations, dietican error does

happen

Tammy wrote:

> yes, im very strict with that...I am only using the recipes that the

> dietician has made out for us and he gets only fruit2o and certain

> diet sodas to drink. There are some carbs (very very low) in the

> foods that he has but they are really minimal like 1 g here or

> there. I guess I just thought by now, even if we didnt have complete

> seizure control, that we would see at least an improvement in maybe

> how many but just like clockwork hes having them same as pre-diet. I

> guess we just keep plugging away at it and see what happens with our

> next visit...thanks for your input!

>

>

[Guest guest]

What ratio is he on? Do you still have meds on board? What are the sweeteners in

the Fruit20 and the diet sodas? Beware of nutrasweet...... seizure trigger for

many.

Patti, mom to Katera........ former Keto Kid

Re: no results and losing hope

yes, im very strict with that...I am only using the recipes that the dietician

has made out for us and he gets only fruit2o and certain diet sodas to drink.

There are some carbs (very very low) in the foods that he has but they are

really minimal like 1 g here or there. I guess I just thought by now, even if

we didnt have complete seizure control, that we would see at least an

improvement in maybe how many but just like clockwork hes having them same as

pre-diet. I guess we just keep plugging away at it and see what happens with

our next visit...thanks for your input!

[Guest guest]

Tammy,

Why did they do that? Were ketones dropping overnight? What's his weight like? I

mean percentile-wise...... where is he on the charts?

Patti, mom to Katera

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

The only tweak that has been done so far is that

he has 7g of added fat to his night-time snack.

[Guest guest]

Tammy,

Why did they do that? Were ketones dropping overnight? What's his weight like? I

mean percentile-wise...... where is he on the charts?

Patti, mom to Katera

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

The only tweak that has been done so far is that

he has 7g of added fat to his night-time snack.

[Guest guest]

Tammy,

The doctors told me that I should see results in 3 weeks. Well, um. . . they

were bit off the mark on that one. It took us NINE MONTHS to see any kind of

control and it took us weaning dilantin totally for the diet to begin its work.

The more medication we have weaned since then the better my son does and he is

finally seizure free now (almost 3 months) and almost off all meds If your son

is still taking meds, this could be why the diet isn't 'kicking in' for him.

Also, are you using any atkins products or low-carb products? We were told that

even tho they are lower in carbs that 'regular' foods, we still had to count the

full carb counts, not the ECC that people doing atkins can count. Some people

have used these items for their children without trouble, but when I use them

for Mike (and I have started using a bit here and there) I use the total carb

counts, not the reduced carb counts. Hope this makes sense.

Jenn

[Guest guest]

Tammy,

The doctors told me that I should see results in 3 weeks. Well, um. . . they

were bit off the mark on that one. It took us NINE MONTHS to see any kind of

control and it took us weaning dilantin totally for the diet to begin its work.

The more medication we have weaned since then the better my son does and he is

finally seizure free now (almost 3 months) and almost off all meds If your son

is still taking meds, this could be why the diet isn't 'kicking in' for him.

Also, are you using any atkins products or low-carb products? We were told that

even tho they are lower in carbs that 'regular' foods, we still had to count the

full carb counts, not the ECC that people doing atkins can count. Some people

have used these items for their children without trouble, but when I use them

for Mike (and I have started using a bit here and there) I use the total carb

counts, not the reduced carb counts. Hope this makes sense.

Jenn

[Guest guest]

Oh Tammy hang in there, I know how frustrating it is. It takes time,

this diet requires a lot of patience. My Kristan was doing the best

she had ever done last week, only 1-2 seizures a day and I was hoping

they would just stop, but they have picked up to 8 a day now. Lately

it seems like she does best when her ketones are low - weird?! Have

you tried to decrease calories? The other parents I'm sure are more

helpful. Good luck.

Satnam, mom to Kristan, 16 months

Keto kid since August 2003

> I guess Im just posting to vent a little bit........Im not giving

up

> and Im not expecting miracles but ANY decrease in seizures would be

> nice!

>

> Austin has been on this diet for five weeks now, has had large

> ketones, we dont skip a beat with his meals and calculations, but

> yet still absolutely no seizure control....not even a hint of

> improvement. He has his seizures right on schedule. Its just

> pretty discouraging!!!! we go for our second follow up visit April

> 8th and Im hoping they do some sort of change with him to try and

> tweak this diet. The only tweak that has been done so far is that

> he has 7g of added fat to his night-time snack.

>

> I know five weeks isnt alot of time to alot of you because youve

> been doing this for so long but I guess Im just losing that glimmer

> of hope that this diet is going to work for him because we have

seen

> nothing yet. I will still give it my full committment I guess I

> just needed to vent and tell somebody about my frustrations!

> lol....thanks for listening guys! .........Tammy (Austins Mom)

[Guest guest]

Tammy,

When first talked with our keto team about doing the diet they asked

us to commit to at least 3 months, preferably 6, so that they could

adjust the diet. Our dietician told us that she didn't usually make

any changes until the 1 month mark, because it can take that long

for the body to get used to the metabolic shift from buring glucose

to burning fat.

We were lucky to see immediate control, but we also stopped the meds--

one when we started the diet and the other 3 wks. later.

Medications can really cause problems with the diet.

How large are his ketones? Some kids need v. high ketones (160) but

others (mine is one) do better with mod or mod-large readings. We do

best around 80. Is Austin getting enough, but not too much fluid?

Has he gained any weight in the 5 wks. on the diet? There are many

possibilities. It's best to make changes one at a time. In the

beginning, I kept a journal of everything my daugher ate or drank,

plus anything that I noticed. Sometimes you can see a pattern over

time. Is your keto team supportive and willing to dig in and help

you manipulate the diet?

You can vent here anytime. I do understand your frustration. Just

want to offer you some encouragement to hang in there and keep going!

Cammie

[Guest guest]

Tammy,

When first talked with our keto team about doing the diet they asked

us to commit to at least 3 months, preferably 6, so that they could

adjust the diet. Our dietician told us that she didn't usually make

any changes until the 1 month mark, because it can take that long

for the body to get used to the metabolic shift from buring glucose

to burning fat.

We were lucky to see immediate control, but we also stopped the meds--

one when we started the diet and the other 3 wks. later.

Medications can really cause problems with the diet.

How large are his ketones? Some kids need v. high ketones (160) but

others (mine is one) do better with mod or mod-large readings. We do

best around 80. Is Austin getting enough, but not too much fluid?

Has he gained any weight in the 5 wks. on the diet? There are many

possibilities. It's best to make changes one at a time. In the

beginning, I kept a journal of everything my daugher ate or drank,

plus anything that I noticed. Sometimes you can see a pattern over

time. Is your keto team supportive and willing to dig in and help

you manipulate the diet?

You can vent here anytime. I do understand your frustration. Just

want to offer you some encouragement to hang in there and keep going!

Cammie

[Guest guest]

Tammy...

Hang in there. This diet is so individual...things have to be just

right for each child. The old thought of high ketones and high ratios

is proving to not be true for many kids...mine did best on low

ketones and even had more seizures on HIGH ketones. Fruits set some

kids off. Too many calories or too few can be a problem. Meds can

really interfer and it takes a leap of faith sometimes to wean when

things don't seem to be improving. Fluid restrictions can make a

difference. There is a trouble shooting guide in the files section

at the site that has some fine tuning options, but mostly, it's

PATIENCE and gradual change that helps. Take it slowly...one change

at a time.

If he's gaining or losing weight...cals might be a good first place

to look.

If ketones are consistently high with no control, lowering the ratio

might be worthwhile.

If there are mutliple meds on board, weaning may be the first place

to start.

This is where a good keto team helps....they should be able to look

at his case and see where the needs are. Hopefully they aren't just

reading a manual and adjusting....it really is too individual for

that, though that is how it used to work.

Hang in there, look at everything, be willing to go slowly and give

it time to work. Maybe post his ratio and numbers and a few of the

more common meals along with the meds he's on and what his weight is

doing and someone might see something. Nan

[Guest guest]

Tammy...

Hang in there. This diet is so individual...things have to be just

right for each child. The old thought of high ketones and high ratios

is proving to not be true for many kids...mine did best on low

ketones and even had more seizures on HIGH ketones. Fruits set some

kids off. Too many calories or too few can be a problem. Meds can

really interfer and it takes a leap of faith sometimes to wean when

things don't seem to be improving. Fluid restrictions can make a

difference. There is a trouble shooting guide in the files section

at the site that has some fine tuning options, but mostly, it's

PATIENCE and gradual change that helps. Take it slowly...one change

at a time.

If he's gaining or losing weight...cals might be a good first place

to look.

If ketones are consistently high with no control, lowering the ratio

might be worthwhile.

If there are mutliple meds on board, weaning may be the first place

to start.

This is where a good keto team helps....they should be able to look

at his case and see where the needs are. Hopefully they aren't just

reading a manual and adjusting....it really is too individual for

that, though that is how it used to work.

Hang in there, look at everything, be willing to go slowly and give

it time to work. Maybe post his ratio and numbers and a few of the

more common meals along with the meds he's on and what his weight is

doing and someone might see something. Nan

[Guest guest]

Tammy...

Hang in there. This diet is so individual...things have to be just

right for each child. The old thought of high ketones and high ratios

is proving to not be true for many kids...mine did best on low

ketones and even had more seizures on HIGH ketones. Fruits set some

kids off. Too many calories or too few can be a problem. Meds can

really interfer and it takes a leap of faith sometimes to wean when

things don't seem to be improving. Fluid restrictions can make a

difference. There is a trouble shooting guide in the files section

at the site that has some fine tuning options, but mostly, it's

PATIENCE and gradual change that helps. Take it slowly...one change

at a time.

If he's gaining or losing weight...cals might be a good first place

to look.

If ketones are consistently high with no control, lowering the ratio

might be worthwhile.

If there are mutliple meds on board, weaning may be the first place

to start.

This is where a good keto team helps....they should be able to look

at his case and see where the needs are. Hopefully they aren't just

reading a manual and adjusting....it really is too individual for

that, though that is how it used to work.

Hang in there, look at everything, be willing to go slowly and give

it time to work. Maybe post his ratio and numbers and a few of the

more common meals along with the meds he's on and what his weight is

doing and someone might see something. Nan