Re: blood ketones/glucose/...anyone

[Guest guest]

Hi ,

Have you ever done any blood ketone testing for ? We are

just starting for Macie. Her urine sticks are almost always 80-160.

In hospital, her blood level was in the 2's or 3's (target range 4-

6). I feel like we've wasted a lot of time by not trying this...of

course our last neuro used only urine.

I asked our new dietitian about glucose monitoring and explained

to her that we had little success in figuring out any patterns. She

said in her experience the glucose readings were not much help in

trying to fine tune or predict seizure control. She said there is a

natural ebb and flow of glucose in the body, and it doesn't take much

to upset that. Sometimes you'll have abnormal readings from some

process at work in your body (fighting off illness, etc.) and never

know why.

I thought this was interesting and might explain why we never got

any useful info from Macie's glucose readings. Of course, Macie may

just be the exception (she usually is). I'm interested to see what

others have to say about this. I know some of you use it

successfully.

Just wanted to share....

Thanks,

Glenna

> > > > HI Cleo,

> > > > We just got back from a visit to Macie's new epilepsy

center.

> > > > They are using blood ketone measurements, and we never did

> before.

> > > > The dietitian gave us the machine, and the neuro wrote a

> > > prescription

> > > > for the strips. She said they run $5 or $6 a strip (I can't

> wait

> > > to

> > > > see what our insurance ends up paying!!).

> > > > The brand we have is a Precision Extra by Medisense. It

> also

> > > > does glucose with a different strip. There may be others out

> there.

> > >

> > > >

> > > > Best wishes,

> > > >

> > > > Glenna

> > > >

> > > > FYI: Macie's urine ketones have been consistently high. Her

> blood

> > > > ketones while in hospital (24 hours) were in the 2's and

3's.

> They

> > > > said the 4-6 range is usually necessary for seizure control.

> We're

> > > > hoping this will be a helpful tool for us, as much as we hate

to

> > > > stick her

> > > >

> > > >

> > > >

> > > >

> > > > >

> > > > > Hi all,

> > > > >

> > > > > I read a while back about a home tester for ketones in the

> blood?

> > > > >

> > > > > Where was that from, u.k.?

> > > > >

> > > > > Thanks,

> > > > >

> > > > > Cleo

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

So right, Sandi! Whatever it takes, right?

Glenna

> Congratulations --having a neuro listen to you and help answer your

questions

> There is no " right " answer

> All kids seem to react so differently to Ketone levels, glucose

levels,

> ratios etc...

> Some of our kids only need the 80's ketones and others need 160

> I believe that the fine-tuning of blood ketone and glucose testings

should be

> " tried "

> We try ratio change up/down, calories up/down, hydration, etc...

> When we are at a loss, and our child is still having seizures, TRY

everything

> Maybe a part of the puzzle can be solved

> I do not believe it is just one thing, but a combination of factors

to help

> with seizure control, for some kids

> Just think, some have complete seizure control on a " basic " keto

diet and

> never know what fine-tuning is

> Some learn a " new " diagnosis, because the diet is or has stopped

working

> The glucose levels help with my daughter, in that if levels creep

up--we get

> to " double-check " --Illness?, Extra Calories?, Too-little calories?,

etc..

> But I believe that this is not a seizure predictor or a way of fine-

tuning to

> the point of being seizure-free

> It has been said before--is it the Ketones?, Lower glucose levels?,

calorie

> reduction?, increase in fats?, ---what actually is the main

component to help

> with seizure control??

> As we all have seen--it is different for all kids AND it seems to

change

> with our kids--

> Is their an answer to all of this?

> I am still waiting!

> I know this diet is always being fine-tuned BUT look when our

kids were on

> meds-or the meds they remain on?

> We or should I say the Neuros are always tweaking the dose to

obtain levels

> for optimum seizure control

> Guess we will continue to tweak the diet

> And try urine and blood tests

> And enjoy our children every second

> We are truly blessed with our children

> Our children are all amazing-and blessed!

> Sandi

>

>

>

[Guest guest]

So right, Sandi! Whatever it takes, right?

Glenna

> Congratulations --having a neuro listen to you and help answer your

questions

> There is no " right " answer

> All kids seem to react so differently to Ketone levels, glucose

levels,

> ratios etc...

> Some of our kids only need the 80's ketones and others need 160

> I believe that the fine-tuning of blood ketone and glucose testings

should be

> " tried "

> We try ratio change up/down, calories up/down, hydration, etc...

> When we are at a loss, and our child is still having seizures, TRY

everything

> Maybe a part of the puzzle can be solved

> I do not believe it is just one thing, but a combination of factors

to help

> with seizure control, for some kids

> Just think, some have complete seizure control on a " basic " keto

diet and

> never know what fine-tuning is

> Some learn a " new " diagnosis, because the diet is or has stopped

working

> The glucose levels help with my daughter, in that if levels creep

up--we get

> to " double-check " --Illness?, Extra Calories?, Too-little calories?,

etc..

> But I believe that this is not a seizure predictor or a way of fine-

tuning to

> the point of being seizure-free

> It has been said before--is it the Ketones?, Lower glucose levels?,

calorie

> reduction?, increase in fats?, ---what actually is the main

component to help

> with seizure control??

> As we all have seen--it is different for all kids AND it seems to

change

> with our kids--

> Is their an answer to all of this?

> I am still waiting!

> I know this diet is always being fine-tuned BUT look when our

kids were on

> meds-or the meds they remain on?

> We or should I say the Neuros are always tweaking the dose to

obtain levels

> for optimum seizure control

> Guess we will continue to tweak the diet

> And try urine and blood tests

> And enjoy our children every second

> We are truly blessed with our children

> Our children are all amazing-and blessed!

> Sandi

>

>

>

[Guest guest]

So right, Sandi! Whatever it takes, right?

Glenna

> Congratulations --having a neuro listen to you and help answer your

questions

> There is no " right " answer

> All kids seem to react so differently to Ketone levels, glucose

levels,

> ratios etc...

> Some of our kids only need the 80's ketones and others need 160

> I believe that the fine-tuning of blood ketone and glucose testings

should be

> " tried "

> We try ratio change up/down, calories up/down, hydration, etc...

> When we are at a loss, and our child is still having seizures, TRY

everything

> Maybe a part of the puzzle can be solved

> I do not believe it is just one thing, but a combination of factors

to help

> with seizure control, for some kids

> Just think, some have complete seizure control on a " basic " keto

diet and

> never know what fine-tuning is

> Some learn a " new " diagnosis, because the diet is or has stopped

working

> The glucose levels help with my daughter, in that if levels creep

up--we get

> to " double-check " --Illness?, Extra Calories?, Too-little calories?,

etc..

> But I believe that this is not a seizure predictor or a way of fine-

tuning to

> the point of being seizure-free

> It has been said before--is it the Ketones?, Lower glucose levels?,

calorie

> reduction?, increase in fats?, ---what actually is the main

component to help

> with seizure control??

> As we all have seen--it is different for all kids AND it seems to

change

> with our kids--

> Is their an answer to all of this?

> I am still waiting!

> I know this diet is always being fine-tuned BUT look when our

kids were on

> meds-or the meds they remain on?

> We or should I say the Neuros are always tweaking the dose to

obtain levels

> for optimum seizure control

> Guess we will continue to tweak the diet

> And try urine and blood tests

> And enjoy our children every second

> We are truly blessed with our children

> Our children are all amazing-and blessed!

> Sandi

>

>

>