RE: ketone question

[Guest guest]

This is a pretty typical pattern.... could have something to do with not drinking enough throughout the day but if she's on a pretty high ratio, she could just be getting super ketotic. Watch how she's feeling.... irritability, panting, red face or ears, strong actetoney smell on the breath (like nail polish remover), lethargy..... these could all be signs that she is just WAY too ketotic, which can cause problems and even more seizures. We have always had trouble keeping Katera's ketones down.... even at a 2:1 ratio, she tends to stay up around 160. When the stick goes really "black" (dark, dark purple), Katera is usually feeling rotten and we have to give her some juice, applesauce or a few Cheerios. How's your seizure control?

Patti

ketone question

I have a few questions about ketones. We just started the diet and I am confused about how high the ketones should be. We use the ketone sicks by Bayer(Ketostix). My daughter ususally has between moderate and the first large (80) in the AM. Is this high enough in the am? I have heard this is typical in the am, but is it optimal. Her ketones gradually get bigger throughout the day and by late afternoon, early evening, they are very high, in the second large (160). Is this too large. Last night they should up dark purple the minute I took the stick out of the potty, which alarmed us so we gave her a tablespoon of juice before bed. Also, what is considered 4+ ketones, that Freeman talks about in the book. Is this the second large (160) or more. Is this optimal. Thanks for the feedback. I am not getting much info from the dietician, just that they should be large. We are meeting with the neuro today, so maybe that will help. ' (mom to a) "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Your ketones sound pretty close to the average, but you have to go by the

child. Some do better with lower ketones, never getting much above 80.

Others need to be above 80 even in morning. So you got to look at what

kind of seizure control you have. If it turns black as soon as it touches

urine, there is a good chance she is too ketotic. But if you don't see

any symptoms (lethargy, panting, loss of appetite) I would be tempted to

wait it out. If she drank less during day, the urine will be less dilute

and ketones will show up as darker than what you usually see. The juice

trick is useful but can be a dangerous game, use only a small amount. When

I do it, I give a tiny amount and add water to it.

thigpen@... wrote:

I

have a few questions about ketones. We just started the diet and

I am confused about how high the ketones should be. We use the ketone

sicks by Bayer(Ketostix). My daughter ususally has between moderate

and the first large (80) in the AM. Is this high enough in the am?

I have heard this is typical in the am, but is it optimal.

Her ketones gradually get

bigger throughout the day and by late afternoon, early evening, they are

very high, in the second large (160). Is this too large. Last

night they should up dark purple the minute I took the stick out of the

potty, which alarmed us so we gave her a tablespoon of juice before bed.

Also, what is considered

4+ ketones, that Freeman talks about in the book. Is this the second

large (160) or more. Is this optimal.

Thanks for the feedback.

I am not getting much info from the dietician, just that they should be

large. We are meeting with the neuro today, so maybe that will help.

'

(mom to a)

"The Ketogenic Diet....a realistic

treatment option, NOT just a last resort!"

[Guest guest]

Thanks for the info. When her ketones get that high she has been acting fine, so I guess it's okay. Thanks for the warning signs - I will make sure I watch for those. Her seizure control is good now, but she is on two meds at the time, one brand new, so I would expect that to work for a while (or hope at least). Thanks for the reply.

(mom to a, 3)

[Guest guest]

Thanks for all the replies about the ketones.

[Guest guest]

Ketone levels are different for every child. Some come home from

the hospital having 160 ketones and that is where they stay and they do

great there (altho I have been told that the longer the child is on the

diet, the lower the ketones can be for seizure control as the body gets

used to metabolizing fat etc).

When Mike first started the diet - the first 3 days or so after starting

to feed after fasting, his ketones were consistantly 160, whenever he was

tested. Then they dropped. They were 40 in the am every day and we

saw an increase in seizures until the ketones climbed. (I realize now that

Mike had trouble adjusting to not being able to eat from supper until breakfast

and as his body adjusted this changed) Now we dont see too many seizures

in the am (altho since he is having a peeing problem and only goes once

a day, I cant tell exactly what ketones are in the am) and I know that

his ketones are 80 at bedtime.

He used to have to be at 160 for seizure control but now, after 10 months

on the diet he has seizure control (still not totally seizure free but

still getting better) at 80.

HTH

Jenn

thigpen@... wrote:

I

have a few questions about ketones. We just started the diet and

I am confused about how high the ketones should be. We use the ketone

sicks by Bayer(Ketostix). My daughter ususally has between moderate

and the first large (80) in the AM. Is this high enough in the am?

I have heard this is typical in the am, but is it optimal.

Her ketones gradually get

bigger throughout the day and by late afternoon, early evening, they are

very high, in the second large (160). Is this too large. Last

night they should up dark purple the minute I took the stick out of the

potty, which alarmed us so we gave her a tablespoon of juice before bed.

Also, what is considered

4+ ketones, that Freeman talks about in the book. Is this the second

large (160) or more. Is this optimal.

Thanks for the feedback.

I am not getting much info from the dietician, just that they should be

large. We are meeting with the neuro today, so maybe that will help.

'

(mom to a)

[Guest guest]

Jenn,

Don't know if I've read your post right, but do you think Mike may have even better control if his ketones were higher on average?

If he is only 80 at bed time, he must drop pretty low later on in the night and early morn.Or have you tried for higher ketones and seen an adverse result before?

Hill in NZ

Re: ketone question

Ketone levels are different for every child. Some come home from the hospital having 160 ketones and that is where they stay and they do great there (altho I have been told that the longer the child is on the diet, the lower the ketones can be for seizure control as the body gets used to metabolizing fat etc). When Mike first started the diet - the first 3 days or so after starting to feed after fasting, his ketones were consistantly 160, whenever he was tested. Then they dropped. They were 40 in the am every day and we saw an increase in seizures until the ketones climbed. (I realize now that Mike had trouble adjusting to not being able to eat from supper until breakfast and as his body adjusted this changed) Now we dont see too many seizures in the am (altho since he is having a peeing problem and only goes once a day, I cant tell exactly what ketones are in the am) and I know that his ketones are 80 at bedtime. He used to have to be at 160 for seizure control but now, after 10 months on the diet he has seizure control (still not totally seizure free but still getting better) at 80. HTH Jenn thigpen@... wrote: I have a few questions about ketones. We just started the diet and I am confused about how high the ketones should be. We use the ketone sicks by Bayer(Ketostix). My daughter ususally has between moderate and the first large (80) in the AM. Is this high enough in the am? I have heard this is typical in the am, but is it optimal. Her ketones gradually get bigger throughout the day and by late afternoon, early evening, they are very high, in the second large (160). Is this too large. Last night they should up dark purple the minute I took the stick out of the potty, which alarmed us so we gave her a tablespoon of juice before bed. Also, what is considered 4+ ketones, that Freeman talks about in the book. Is this the second large (160) or more. Is this optimal. Thanks for the feedback. I am not getting much info from the dietician, just that they should be large. We are meeting with the neuro today, so maybe that will help. ' (mom to a) "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

[Guest guest]

,

Could you let us know what your neuro says

about the ketones?

Thanks.

Rhonda

Philippines

Also, what is considered 4+ ketones,

that Freeman talks about in the book. Is this the second large (160) or

more. Is this optimal.

[Guest guest]

This sounds exactly like 's pattern. She's

usually around 40-80 (closer to 80) in the morning and

80-160 (closer to 160) at night.

It really all depends on the child. One of the

" myths " (often perpetuated by neuros and dieticians)

is that you always have to be as high as possible for

this to work. There are kids who do best at high

ketones, kids who do best at moderate and kids who do

best with low.

Remember, too, that what you see on the stick is

always going to be slightly delayed because you're

talking about urine output as opposed to blood, which

would be " real time. " Just because you see her go

black on the stick doesn't mean a need for juice (or I

prefer club soda) unless she's showing symptoms of

being too ketotic -- panting, red cheeks,

inconsolable, etc.

As for the 4+, etc. -- it just depends on the stix.

We use the same as you do. I think the 4+ would be a

160 -- but again, that may not be ideal for your

child.

Hope this helps.--D

--- thigpen@... wrote:

My daughter ususally has between

> moderate and the first

> large (80) in the AM. Is this high enough in the

> am?

> Her ketones gradually get bigger throughout the day

> and by late afternoon,

> early evening, they are very high, in the second

> large (160). Is this too

> large. Last night they should up dark purple the

> minute I took the stick out

> of the potty, which alarmed us so we gave her a

> tablespoon of juice before

> bed.

__________________________________________________

[Guest guest]

I talked to a's neurologist about the ketones and her pattern - med to large in the am and by evening very large - and he said it was a typical pattern and that really large (160) in the pm was fine as long as she was acting fine, which is pretty much what everybdoy here said.

(mom to a, age 3)

[Guest guest]

When Mike was first on the diet we needed ketones at 160 for seizure control.

Now - 10 months later, he is very very hyper at 160 and find he does better

- and doesnt lose any control if he is at 80.

Jenn

richard & susan hill wrote:

Jenn,Don't

know if I've read your post right, but do you think Mike may have even

better control if his ketones were higher on average?If

he is only 80 at bed time, he must drop pretty low later on in the night

and early morn.Or have you tried for higher ketones and seen an adverse

result before?

Hill in NZ