Re: Ketone Level to High-Nunu

[Guest guest]

Hi Nunu,

With ketones that sky-high (was the bhb measured in mmol/L?) it sounds like

she may be burning some body fat to add to the ketone producing caloric fat. If

so, did she actually need to lose any weight?

I would watch the scales very carefully in the near future to make sure she

isn't now on insuffucient calories. Her glucose is probably on the low side with

ketones that high as well, something else you might have to keep a very close

eye on.

I'm not sure what her current height and weight is, but the calorie allowance

for a 2 and a half yr old would usually be based on approx 70-75 cals per kg of

body weight, depending on her activity level/metabolism.

So taking an 'average' weight for a 2 and a half yr old of say 13 kilos, then

the cals would usually be set between approx 910 and 975 cals. Obviously this

is just an example, but it makes me wonder why she was set so high to begin with

on that 1200 level.

With ketones now shooting that high, I would say that the large reduction down

to 700 (this would be roughly what a 10 kilo child would be set calorie wise on,

so unless your daughter is very delayed and extremely inactive it sounds mighty

low to me) has overshot the mark, but it is wonderful (and an excellent sign

diet/seizure wise) that you have seen her now gain seizure control. What I would

be doing now if it were me, is slowly inching those calories back up and

regularly monitoring blood ketones (bhb) with every cal increase that you do.

You can buy a home testing bhb kit (via fingerprick like diabetics use) to keep

track regularly at home (it also tests glucose levels which may be important

right now too), this will help you finetune the diet back to a 'happy medium'

place where she gets her appetite back from not being overly ketotic, but still

maintains good strong ketones for seizure control.

I personally think that this is a calorie, not a ratio issue at play with the

very high ketones you are currently seeing, but while you are in the process of

getting calories at the right level, you may have to lower the ratio to bring

the ketones back down to an acceptable level. Some kiddies need a bhb of 6.0

mmol/L for seizure control, some need as low as 2.0 mmol/L, I don't know of many

who could continue on in a good place seizure or growth/health wise for too long

up at that very high 12.0 level. Again though, you would need to check and see

if the measurement she had done was based on mmol/L to know if these comparisons

are on an 'apples for apples' basis.

Good luck,

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

From: nunudagne

Thanks for the replies to my message. I found out that my daughter's

blood ketones are too high by a blood test that her nuerologist

ordered (beta-hydroxybutryic acid), which shows she is at 12.

I want to get her ketones lower so she can start eating solid food.

She is 2 1/2 yrs old and has only been taking liquids (keto formula)

for the past week. Her dietician has been adjusting her calories so

she can gain better seizure control. We are now at a point where she

has full seizure control, but it is at the expense of her not eating

any solid food.

Bill-Your suggestion to lower ratio to 3:1 is a good idea. I will be

talking to the nuerologist and dietician tomorrow to see what other

options we have.

Any other suggestions anyone else has will be really helpful.

Nunu

>

[Guest guest]

Hi :

I has to print your message because it had so much information.

Thank you for making this " learning curve " a little easier on me. I

have taken the suggestions from your messages and others and lowered

my daughter's ratio to 3:1 and also increased her calories to 1,000.

We are still struggling with getting her to eat and drink. She has

about 20 ounces of formula, which is a total of about 730 calories.

Her appetite has not improved and I have to force her to drink her

keto-formula. She still refuses her ketogeic meals.

Her blood ketone tests are done at the lab using mg/dl. You had

asked if the BHB was measured in mmol/L. Her last BHB test showed

she was at 9. She is still high and I am wondering if the doctors

need to do something more aggressive to get her ketones lower. We

still have full seizure control but I am very worried that she is not

getting enough calories and the fact that she has not eaten any solid

food for the past two weeks is really nerve-racking.

I guess my question is, does it take this long to get the ketones to

go lower and is there anything that the doctors can do that can be

more aggressive? Also, where can I purchasse a bhb home testing kit?

Sorry for rambling on like this but I feel that I am in over my head

with this issue and am not getting much support from my doctor & his

Keto team.

-- In ketogenic , " & Hill "

wrote:

> Hi Nunu,

> With ketones that sky-high (was the bhb measured in mmol/L?) it

sounds like she may be burning some body fat to add to the ketone

producing caloric fat. If so, did she actually need to lose any

weight?

> I would watch the scales very carefully in the near future to

make sure she isn't now on insuffucient calories. Her glucose is

probably on the low side with ketones that high as well, something

else you might have to keep a very close eye on.

> I'm not sure what her current height and weight is, but the

calorie allowance for a 2 and a half yr old would usually be based on

approx 70-75 cals per kg of body weight, depending on her activity

level/metabolism.

> So taking an 'average' weight for a 2 and a half yr old of say 13

kilos, then the cals would usually be set between approx 910 and 975

cals. Obviously this is just an example, but it makes me wonder why

she was set so high to begin with on that 1200 level.

> With ketones now shooting that high, I would say that the large

reduction down to 700 (this would be roughly what a 10 kilo child

would be set calorie wise on, so unless your daughter is very delayed

and extremely inactive it sounds mighty low to me) has overshot the

mark, but it is wonderful (and an excellent sign diet/seizure wise)

that you have seen her now gain seizure control. What I would be

doing now if it were me, is slowly inching those calories back up and

regularly monitoring blood ketones (bhb) with every cal increase that

you do. You can buy a home testing bhb kit (via fingerprick like

diabetics use) to keep track regularly at home (it also tests glucose

levels which may be important right now too), this will help you

finetune the diet back to a 'happy medium' place where she gets her

appetite back from not being overly ketotic, but still maintains good

strong ketones for seizure control.

> I personally think that this is a calorie, not a ratio issue at

play with the very high ketones you are currently seeing, but while

you are in the process of getting calories at the right level, you

may have to lower the ratio to bring the ketones back down to an

acceptable level. Some kiddies need a bhb of 6.0 mmol/L for seizure

control, some need as low as 2.0 mmol/L, I don't know of many who

could continue on in a good place seizure or growth/health wise for

too long up at that very high 12.0 level. Again though, you would

need to check and see if the measurement she had done was based on

mmol/L to know if these comparisons are on an 'apples for apples'

basis.

> Good luck,

>

>

>

>

> ----- Original Message -----

> From: nunudagne

>

>

> Thanks for the replies to my message. I found out that my

daughter's

> blood ketones are too high by a blood test that her nuerologist

> ordered (beta-hydroxybutryic acid), which shows she is at 12.

>

> I want to get her ketones lower so she can start eating solid

food.

> She is 2 1/2 yrs old and has only been taking liquids (keto

formula)

> for the past week. Her dietician has been adjusting her

calories so

> she can gain better seizure control. We are now at a point

where she

> has full seizure control, but it is at the expense of her not

eating

> any solid food.

>

> Bill-Your suggestion to lower ratio to 3:1 is a good idea. I

will be

> talking to the nuerologist and dietician tomorrow to see what

other

> options we have.

>

>

> Any other suggestions anyone else has will be really helpful.

>

> Nunu

>

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> >

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