Re: Questions about ketones

[Guest guest]

>> wrote:

....Do some of your children seem to do better with lighter ketones? I

would really appreciate hearing your experiences.

Thanks,

(Mallorie's mom)<<<<

Hi ,

We are experiencing the same thing right now. Since we started

a more of an Atkins type diet, Timo seems to make more ketones

as seen on the ketostix. (160 very early in the day) He started being

restless ALL through the night and would settle down in the early

hours of the morn then sleep late, but peacably. Two nights ago,

we put him to bed at 40 and he slept all night =) no tossing and

turning. Last night we put him to bed at 80...he stlll slept all night.

Hubby says we should put him to bed at 180 tonight and see what

happens. Not sure if it is the ketones or eating late was causing

his restless nights...may not be either ...I suspect the higher ketones.

Tina

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[Guest guest]

Yes, lots of kids feel better, and even have better seizure control on lighter

ketones. Katera does well at around 80..... my problem has always been keeping

her ketones from going too high. She has a miserable time when she gets too

ketotic..... irritable, lethargic, refuses to drink and eat. I think it's too

bad that some docs are so narrow-minded and keep insisting that every kid has to

be on the diet to the exact same specifications. No wonder far too many families

end up quitting before the diet has a real chance.

Patti

Questions about ketones

Hi Everyone,

I am wondering about your experiences with moderate ketones. We increased

Mallorie's ratio to 4.1 a couple of weeks ago because her ketones wouldn't stay

large. Some changes we have noticed is now she is not sleeping as well. She is

getting up in the middle of the night again, she is also grumpier. We have also

begun weaning the Neurontin but the grumpiness and her waking in the middle of

the night started before the decrease in medication.

On Sunday for some unknown reason her ketones were at small to moderate all

day but she had a great day. Her mood was really good, very few seizures and she

was so happy. This was just one day but looking back she she seems to of felt

better when her ketones were not so large. I know that larger ketones are

suppose to be better for seizure control and her doctor wants her at 3+ to 4+

(80-160). I'm not really sure what to do. Now that we have started to wean her

medication I don't think her doctor would want us to make any other changes. I

guess we should just sit tight for a while.

Do some of your children seem to do better with lighter ketones? I would

really appreciate hearing your experiences.

Thanks,

(Mallorie's mom)

[Guest guest]

Patti,

What's your basis for saying " lots of kids " do better with lower

ketones. Studies of large numbers seem to indicate the opposite. Is

Katera seizure free? Has she had blood ketones checked to determine

whether they really are that high?

Another way of looking at this might be to say that parents aren't

patient enough to allow their kids several weeks to adapt to high

enough levels of ketosis to achieve the best seizure control

possible. They just settle for lower ketones because their kids feel

better at the moment. Therefore seizures persist.

Lisette felt terrible her first two weeks. As she has adapted, she

has begun to feel better. My experience is limited, I know, but I

find it hard to believe that " lots of kids " do better when the

studies and experience of people like Freeman indicate otherwise.

Neil

> Yes, lots of kids feel better, and even have better seizure control

on lighter ketones. Katera does well at around 80..... my problem has

always been keeping her ketones from going too high. She has a

miserable time when she gets too ketotic..... irritable, lethargic,

refuses to drink and eat. I think it's too bad that some docs are so

narrow-minded and keep insisting that every kid has to be on the diet

to the exact same specifications. No wonder far too many families end

up quitting before the diet has a real chance.

>

> Patti

[Guest guest]

After being on this list for quite awhile, I can say with absolute

certainty that many kids do better with lower ketones -- in terms of

behavior, stomach issues and seizure control. Too often, neuros go

for the " higher is better " approach and people quit the diet because

they don't get seizure control at a 4.1 ratio. Our control has

gotten better the more we've gone down on the ratio. This is one of

those issues where real-life experience may mean more than scientific

studies (which I've found, is often the case). The key is finding

where your " special place " is -- where you have the best quality of

life and best seizure control. Fine tuning may not always mean going

up on the ratio and thus aiming for higher ketones.--D

> Patti,

>

> What's your basis for saying " lots of kids " do better with lower

> ketones.

[Guest guest]

,

I remember reading on the list that many kids do better with 80ish ketones.

I think someone even mentioned their keto clinic strives for it. I don't see

greater seizure control with higher ketones, only lots more crabbiness! When

our regular pediatrician was out of town we saw another one. She was

excellent and very familiar with the diet. She said that higher ketones make

kids feel " yucky " .

ashley

alex's mom

----------

To: " ketogenic diet group " <ketogenic >

Subject: Questions about ketones

Date: Tue, Jul 30, 2002, 2:37 AM

Do some of your children seem to do better with lighter ketones? I would

really appreciate hearing your experiences.

[Guest guest]

,

Rohan has always done better on lower ketones.

We even had to reduce his ratio while weaning

depakote, but I guess it is an individual thing as

to how your child responds to things.

I know most Dr.s say high ketones are best, but

it is not true for some children. Rohan's Dr. was

also of the same opinion but has changed her mind

now.

Saro....mum to Rohan (13.5 yrs, on KGD from 02/00, med-free for 1.5 yrs,

but now on Diamox since 6/6/02)

Questions about ketones

> Hi Everyone,

>

> I am wondering about your experiences with moderate ketones. We increased

Mallorie's ratio to 4.1 a couple of weeks ago because her ketones wouldn't

stay large. Some changes we have noticed is now she is not sleeping as well.

She is getting up in the middle of the night again, she is also grumpier. We

have also begun weaning the Neurontin but the grumpiness and her waking in

the middle of the night started before the decrease in medication.

> On Sunday for some unknown reason her ketones were at small to moderate

all day but she had a great day. Her mood was really good, very few seizures

and she was so happy. This was just one day but looking back she she seems

to of felt better when her ketones were not so large. I know that larger

ketones are suppose to be better for seizure control and her doctor wants

her at 3+ to 4+ (80-160). I'm not really sure what to do. Now that we have

started to wean her medication I don't think her doctor would want us to

make any other changes. I guess we should just sit tight for a while.

>

> Do some of your children seem to do better with lighter ketones? I would

really appreciate hearing your experiences.

>

> Thanks,

> (Mallorie's mom)

>

>

>

[Guest guest]

I think that saying " lots of kids " just means that there are a number of

children who have shown (over a period of time) to be better controlled with low

ketone levels. I dont think it means that the majority display this tendency,

but rather that there are perhaps significant numbers experiencing this to make

it worth considering when fine tuning the diet for the individual child. Most of

us use the urinary ketones as a guide and these levels are a reasonable way of

determining ketosis. Obviously blood levels give a better picture but I dont

believe they are essential.

Those of us who have decided that our kids do better with low or moderate

urinary ketones, are probably in tune enough with our children to make that

assessment. After more than two years I feel rather well qualified to say that

my daughter does much better on moderate ketones than on high, and I have

altered her ratio as needed to reduce ketones and get better control. I feel as

if I have been very patient in learning how my child reacts to changes in her

keto diet. She is lethargic, irritable, nauseous, flushed and panting when

urinary ketones are high, and having seen this often enough, and having reduced

her ratio accordingly each time, I see without any doubt whatsoever, that she

has fewer seizures and is more comfortable when the ketone level drops. Fewer

seizures is my goal for her, but her physical comfort and well being are also

important, and I would not make her endure the symptoms of distress for a long

period of time just to see if seizures settle, when I can adjust her ketone

levels quickly and effectively and get better seizure control anyway. I did not

learn this in just a few weeks, and I dont need a blood test to prove it.

I believe that studies are a guide only, and do not accept that every child will

fit what the studies indicate is the expected outcome. There will always be

those who are on the ends of a normal distibution, and each child responds to

the diet in his/her own way. With so many variables in play (ratio, supplements,

other meds, dx, weight, metabolic differences.........) there has to be a wide

variety of outcomes, and I think that is where fine tuning this diet becomes so

important. The books and the experts can tell us to follow certain guidelines,

but lets accept that they are only guidelines, not rules set in concrete, and

each child needs the chance to have their diet tuned to their own particular

needs, according to their own particular responses. I am passionate about this

diet, and believe that fine tuning is the key to success in most cases.

Sometimes not even that will work to make the diet successful, but we at least

have to have a go ....... for our kids' sake.

Off my soap box now ...... just had to explain my experiences with my own child

.......

(Hannah's mum, Australia)

Re: Questions about ketones

Patti,

What's your basis for saying " lots of kids " do better with lower

ketones. Studies of large numbers seem to indicate the opposite. Is

Katera seizure free? Has she had blood ketones checked to determine

whether they really are that high?

Another way of looking at this might be to say that parents aren't

patient enough to allow their kids several weeks to adapt to high

enough levels of ketosis to achieve the best seizure control

possible. They just settle for lower ketones because their kids feel

better at the moment. Therefore seizures persist.

Lisette felt terrible her first two weeks. As she has adapted, she

has begun to feel better. My experience is limited, I know, but I

find it hard to believe that " lots of kids " do better when the

studies and experience of people like Freeman indicate otherwise.

Neil

[Guest guest]

Tina,

My stix say the same as yours. I don't know why but our doctor said

they refer to small-10 as 1+, moderate-40 as 2+. large-80 as 3+ and

large-180 as 4+. I don't know if there is an actual ketone stix that

reads 1+, 2+, 3+ & 4+.

> Could someone please explain to me the different

> numbers I keep reading about as far as ketone levels.

> Our stix range from Trace-5 to Large-160. Where would

> 4+ or 5+ be on my stix? Just so I know...

> Thanks~Tina

>

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