Re: Ratio questions-lowering-Help

[Guest guest]

Hi Joan,

You will probably get different answers from various people here. The

diet is poorly understood. It is only that it does work with some

children and not others. From my understanding, higher ketones are

better for seizure control. But too high and there can be problems, one

is acidosis. We haven't been there ourselves, so there are probably

other problems that I am not aware of. Reduced or no seizures is the

best sign that you have the right level of ketones, with the proviso

that we are all striving to be seizure free and that involves long

months of fine-tuning.

If you are on drugs then things may change when you try to wean the

drugs. This I have experience in!

You should be able to keep ketones relatively stable through proper meal

plans and measuring. Usually ketones are slightly lower in the morning

and higher in the evening. Sometimes fluids have to be regulated to

prevent dilution of the ketones.

My neurologist still isn't certain that the diet is working for our

daughter after 10 months. For that matter I am not sure either, but I am

happy with being off meds.

Bill

jscooptions@... wrote:

>

> Forgive me for all these questions but my new keto team is not communicating

> with me. It has been over a week and I only got one email with some

> questions. I hope I haven't been " blacklisted " for noncompliance.

>

> How do you know what ratio you child needs to be on other than seizures?-Jen

> is seizure free and it seems the ratio we were given 4:1 not accurate and is

> actually bouncing around from meal to meal. The children who are on low

> ratios how did you know they need to be lowered? Is a high ratio only

> necessary for seizure control? Is it better for weaning?

>

> What about blood ketones? In the hosptial she had low blood ketones when we

> were released. At 80on the ketosticks they were only 1.75 and they want 3+

> Can a child be seizure free on those low blood ketones? As long as she is in

> ketosis will the diet work? She has ketones of 80 in the AM when her urine

> is yellow but during the day when it is almost clear from drinking water it

> is only 40 is this OK? She was sick with ketones of 180 so I hesitate to do

> a real 4:1 unless we have to while weaning drugs. I am also concerned

> because if ketones of 80 mean blood ketones of 1.75 then would that mean the

> diet is not really working on her?

[Guest guest]

Hi Joan,

You will probably get different answers from various people here. The

diet is poorly understood. It is only that it does work with some

children and not others. From my understanding, higher ketones are

better for seizure control. But too high and there can be problems, one

is acidosis. We haven't been there ourselves, so there are probably

other problems that I am not aware of. Reduced or no seizures is the

best sign that you have the right level of ketones, with the proviso

that we are all striving to be seizure free and that involves long

months of fine-tuning.

If you are on drugs then things may change when you try to wean the

drugs. This I have experience in!

You should be able to keep ketones relatively stable through proper meal

plans and measuring. Usually ketones are slightly lower in the morning

and higher in the evening. Sometimes fluids have to be regulated to

prevent dilution of the ketones.

My neurologist still isn't certain that the diet is working for our

daughter after 10 months. For that matter I am not sure either, but I am

happy with being off meds.

Bill

jscooptions@... wrote:

>

> Forgive me for all these questions but my new keto team is not communicating

> with me. It has been over a week and I only got one email with some

> questions. I hope I haven't been " blacklisted " for noncompliance.

>

> How do you know what ratio you child needs to be on other than seizures?-Jen

> is seizure free and it seems the ratio we were given 4:1 not accurate and is

> actually bouncing around from meal to meal. The children who are on low

> ratios how did you know they need to be lowered? Is a high ratio only

> necessary for seizure control? Is it better for weaning?

>

> What about blood ketones? In the hosptial she had low blood ketones when we

> were released. At 80on the ketosticks they were only 1.75 and they want 3+

> Can a child be seizure free on those low blood ketones? As long as she is in

> ketosis will the diet work? She has ketones of 80 in the AM when her urine

> is yellow but during the day when it is almost clear from drinking water it

> is only 40 is this OK? She was sick with ketones of 180 so I hesitate to do

> a real 4:1 unless we have to while weaning drugs. I am also concerned

> because if ketones of 80 mean blood ketones of 1.75 then would that mean the

> diet is not really working on her?

[Guest guest]

joan

If you got seizure control, you are doing something right.

Didn't you say the meals averaged 3:1? Why don't you try all meals

at 3;1 and leave her there for a while? Remember the golden rule, no more

than one change at a time or you can't tell who is what. Ketones

are dropping during the day in her urine because its more diluted. But

the right level of ketosis and the right ratio is whatever is working.

Each kid is so different

jscooptions@... wrote:

Forgive me for all these questions but my new

keto team is not communicating

with me. It has been over a week and I only got one email

with some

questions. I hope I haven't been "blacklisted" for noncompliance.

How do you know what ratio you child needs to be on other than seizures?-Jen

is seizure free and it seems the ratio we were given 4:1 not accurate

and is

actually bouncing around from meal to meal. The children

who are on low

ratios how did you know they need to be lowered? Is a high

ratio only

necessary for seizure control? Is it better for weaning?

What about blood ketones? In the hosptial she had low

blood ketones when we

were released. At 80on the ketosticks they were only 1.75

and they want 3+

Can a child be seizure free on those low blood ketones? As

long as she is in

ketosis will the diet work? She has ketones of 80 in the

AM when her urine

is yellow but during the day when it is almost clear from drinking

water it

is only 40 is this OK? She was sick with ketones of 180 so

I hesitate to do

a real 4:1 unless we have to while weaning drugs. I am also

concerned

because if ketones of 80 mean blood ketones of 1.75 then would

that mean the

diet is not really working on her?

Joan-Mom to -11 years old-epilepsy, adhd, autistic behaviors,

mild

cp, speech & learning problems, high functioning & sometimes

charming.

Co-options Coordinator-Bergen, Hudson, Passaic Counties-north NJ

-

[Guest guest]

joan

If you got seizure control, you are doing something right.

Didn't you say the meals averaged 3:1? Why don't you try all meals

at 3;1 and leave her there for a while? Remember the golden rule, no more

than one change at a time or you can't tell who is what. Ketones

are dropping during the day in her urine because its more diluted. But

the right level of ketosis and the right ratio is whatever is working.

Each kid is so different

jscooptions@... wrote:

Forgive me for all these questions but my new

keto team is not communicating

with me. It has been over a week and I only got one email

with some

questions. I hope I haven't been "blacklisted" for noncompliance.

How do you know what ratio you child needs to be on other than seizures?-Jen

is seizure free and it seems the ratio we were given 4:1 not accurate

and is

actually bouncing around from meal to meal. The children

who are on low

ratios how did you know they need to be lowered? Is a high

ratio only

necessary for seizure control? Is it better for weaning?

What about blood ketones? In the hosptial she had low

blood ketones when we

were released. At 80on the ketosticks they were only 1.75

and they want 3+

Can a child be seizure free on those low blood ketones? As

long as she is in

ketosis will the diet work? She has ketones of 80 in the

AM when her urine

is yellow but during the day when it is almost clear from drinking

water it

is only 40 is this OK? She was sick with ketones of 180 so

I hesitate to do

a real 4:1 unless we have to while weaning drugs. I am also

concerned

because if ketones of 80 mean blood ketones of 1.75 then would

that mean the

diet is not really working on her?

Joan-Mom to -11 years old-epilepsy, adhd, autistic behaviors,

mild

cp, speech & learning problems, high functioning & sometimes

charming.

Co-options Coordinator-Bergen, Hudson, Passaic Counties-north NJ

-

[Guest guest]

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

> How do you know what ratio you child needs to be on other than seizures?-

Joan

If sz are satisfactory then the ratio can be lowered. If they increase then

put the ratio back up. It seems there are no hard and fast rules about how

much to increase or decrease the ratio.

Another reason to lower the ratio is if you see signs of acidosis. Ketones

are acidic by nature, and if the child is too ketotic he/she may also be too

acidotic. Symptoms are flushed cheeks, panting, red ears, irritablitiy, and

nausea/vomiting. This can be fixed in the short term by a small amount of

juice or other source of carbs, to quickly lower the ketones and therefore

the acidity. However, if the condition persists for a few days you would

consider lowering the ratio so that ketone levels were more permanently

lowered, and acidosis is then not such a problem. Sounds as if you have seen

the nausea, so perhaps this is what was happening.

The experience of some people also is that the ratio should be droped when

weaning drugs, but I guess this depends on the drug, the ratio, the

metabolism of the individual, etc. I think this can only be worked out by

trial and error as the wean progresses. In fact, much of the management of

this diet is by trial and error, with fine tuning for the individual being

very important.

THe urine ketones measured on the keto stix are only a guide to what is

happening in the blood. Some kids have best sz control with high urinary

ketones, and some are better if they have no more than trace to low levels.

Of course there are all the others in between, and we just have to find at

what level our child does best. I'm not sure that we can say the diet will

work as long as ketosis is established. There are so many variables to

consider b/n people, and what is good for one may be useless for another.

Metabolism varies, and other illnesses and conditions may affect how the

diet works in an individual. Too much fluid can flush ketones out and lower

the level.

Perhaps you need to make adjustments to the types of foods Jen is having.

Oils, etc can make a difference to the response you get, but I am not the

one to advise here because I have no experience with real foods, as Hannah

is totally tube fed the same formula every meal.

Hope this helps

(Hannah's mum, Australia)

[Guest guest]

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

> How do you know what ratio you child needs to be on other than seizures?-

Joan

If sz are satisfactory then the ratio can be lowered. If they increase then

put the ratio back up. It seems there are no hard and fast rules about how

much to increase or decrease the ratio.

Another reason to lower the ratio is if you see signs of acidosis. Ketones

are acidic by nature, and if the child is too ketotic he/she may also be too

acidotic. Symptoms are flushed cheeks, panting, red ears, irritablitiy, and

nausea/vomiting. This can be fixed in the short term by a small amount of

juice or other source of carbs, to quickly lower the ketones and therefore

the acidity. However, if the condition persists for a few days you would

consider lowering the ratio so that ketone levels were more permanently

lowered, and acidosis is then not such a problem. Sounds as if you have seen

the nausea, so perhaps this is what was happening.

The experience of some people also is that the ratio should be droped when

weaning drugs, but I guess this depends on the drug, the ratio, the

metabolism of the individual, etc. I think this can only be worked out by

trial and error as the wean progresses. In fact, much of the management of

this diet is by trial and error, with fine tuning for the individual being

very important.

THe urine ketones measured on the keto stix are only a guide to what is

happening in the blood. Some kids have best sz control with high urinary

ketones, and some are better if they have no more than trace to low levels.

Of course there are all the others in between, and we just have to find at

what level our child does best. I'm not sure that we can say the diet will

work as long as ketosis is established. There are so many variables to

consider b/n people, and what is good for one may be useless for another.

Metabolism varies, and other illnesses and conditions may affect how the

diet works in an individual. Too much fluid can flush ketones out and lower

the level.

Perhaps you need to make adjustments to the types of foods Jen is having.

Oils, etc can make a difference to the response you get, but I am not the

one to advise here because I have no experience with real foods, as Hannah

is totally tube fed the same formula every meal.

Hope this helps

(Hannah's mum, Australia)

[Guest guest]

Joan,

It seems to me because sz-free is the aim of the

diet, it is better the lower the ratio you can attain

it at. I wouldn't worry about the blood ketones

being low if the child is sz-free and is not having

other problems.

Saro

jscooptions@... wrote:

Forgive me for all these questions but my new

keto team is not communicating

with me. It has been over a week and I only got one email

with some

questions. I hope I haven't been "blacklisted" for noncompliance.

How do you know what ratio you child needs to be on other than seizures?-Jen

is seizure free and it seems the ratio we were given 4:1 not accurate

and is

actually bouncing around from meal to meal. The children

who are on low

ratios how did you know they need to be lowered? Is a high

ratio only

necessary for seizure control? Is it better for weaning?

What about blood ketones? In the hosptial she had low

blood ketones when we

were released. At 80on the ketosticks they were only 1.75

and they want 3+

Can a child be seizure free on those low blood ketones? As

long as she is in

ketosis will the diet work? She has ketones of 80 in the

AM when her urine

is yellow but during the day when it is almost clear from drinking

water it

is only 40 is this OK? She was sick with ketones of 180 so

I hesitate to do

a real 4:1 unless we have to while weaning drugs. I am also

concerned

because if ketones of 80 mean blood ketones of 1.75 then would

that mean the

diet is not really working on her?

Joan-Mom to -11 years old-epilepsy, adhd, autistic behaviors,

mild

cp, speech & learning problems, high functioning & sometimes

charming.

Co-options Coordinator-Bergen, Hudson, Passaic Counties-north NJ

-

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[Guest guest]

On Tue, 25 Sep 2001 08:52:39 EDT jscooptions@... writes:

How do you know what ratio you child needs to be on other than seizures?-Jen is seizure free and it seems the ratio we were given 4:1 not accurate and is actually bouncing around from meal to meal. The children who are on low ratios how did you know they need to be lowered? Is a high ratio only necessary for seizure control? Is it better for weaning?

Hey Joan...sorry for the delay in getting back to you...hope to get everything in on

this post...life has just plain ole been crazy round here!

On these questions above...you have to remember that this diet works on the

Goldie locks principle...you gotta find whats "just right" for you. what works

for one might not work for the other. Basically I think the lowest ratio that

gives you seizrues control is what is best. I think generally they start

the older kids on lower ratios and the smaller kids on higher ratios...well

thats what my dietitian said she does. I think you just simply need to get

her established on consistently the same ratio menus and go from there. Generally

with higher ketones you get acidosis...a clue to lower the ratio. sometimes higher

ketones bring on seizures too...every kid is different. I didnt see a difference in

Bry whether hes been on higher ratios or lower ratios..HBOT was the only thing

to bring up his blood ketones high enough to decrease sezirues, and when

his metabolism returned to normal so did the BHBs.

What about blood ketones? In the hospital she had low blood ketones when we were released. At 80on the ketosticks they were only 1.75 and they want 3+ Can a child be seizure free on those low blood ketones? As long as she is in ketosis will the diet work? She has ketones of 80 in the AM when her urine is yellow but during the day when it is almost clear from drinking water it is only 40 is this OK?

Blood ketones are the accurate measure...urine ketones have to many things

that can effect their meaurement and have never matched s BHB. I wonder

about her liquids??? What I do with Bry to insure hes getting the proper amount

of fluids...we use a 16 oz tumbler with a lid and straw. He refills it at lunch, afternoon

and dinner so I know that hes not drinking to much all at once or getting to dehydrated

which seems to contribute with seizrues with him too. I know that there are several

centers that do not keep their kids dehydrated, and I think the key is to make sure

that they are not drinking to much all at one time.

Thanks for the offer -I just lost my ability to figure things out -I have another problem to deal with & my math ability just went out the window. Neither dietition has given me food plans but more important I think I need more protein & calories & don't know how to figure it.I am also confused about which ratio to use.

Ok...I looked back up what I figured on her, and based on her size I agree on her

amount of calories...I think you should add digestive enzymes to help her absorb

what she is getting...these made a HUGE difference in Bry. As far as protien

I do agree that she is not getting enough. I still say that protein based on weight

is hog wash...a skinny person doesnt need less protein the a fat person...and

visa versa. I think averages and ages need to also be considered, and I do

agree that she is way to low on Prot.

The first thing I would do is go over the meal plans and make sure that everyting

is at the proper ratio...remember one change at a time. Then I would add

digestive enzymes and keep a close eye on weight. if she continues to loose

after adding enzymes I would add calories. Then I would add protein. YOu need

to be looking to the 40+ grams that are going to be required as she gets up to

the next age group...as it is she should be getting at least 28

If she remains seizure free you could continue to decrease her ratio and increase

her protein as you do! Get her diet stabilized and then look to drug weans as the

next step.

If you want to type out some of her usual meal plans I can plug them in and

double check them for you. s taco salad is just basicly romaine

lettuce topped with taco meat, Cheddar cheese, tomato, sour cream, usually

a few carbs for a cuke slice on the side...and of course he drinks his oils with

it. same type thing for his tuna salad, except we use mayo, and he likes

celery on the side. Bry likes pepperoni topped with tomato sauce, and

motz cheese put in the broiler. thoes are his favs...his rollups are simply

just krakus ham (has no carbs) with american cheese and mayo and lettuce

rolled inside.

recently all the winter squash is in from the garden...he loves acorn squash with

lots of butter drippin off.

BTW...love the pumpkin idea...

I was curious if you checked into a yeast issue for Jen?? or did I ask this already??

cya

Barb