Re: ketones low at 5:1 ratio-Connie

April 18, 2003

Hi Connie,

Sorry has had a setback, I know things were going along nicely for a

while there - know THAT feeling!!!

One thought I have, is maybe the one off dose each night of ativan is

causing rebounds during the day? It's half life may mean that once the night

dose wears off, he is now dependant on it, and the increase is possibly from

withdrawal each day?

I know this isn't what started the myos off again, but it may be stopping

them resolving again?

On the bright side - at least you know that if you can KEEP good ketones,

his seizures are fairly well controlled now?(poss benzo dependance again

aside that is).

Maybe try restricting calories for a while to see if that helps raise them

again? Mind you if he is lanky, he probably has no body fat to burn to

produce them that way either.

Not sure if you have followed or not, but 's loss of control recently

looks to have been kicked off by glucose levels fluctuating all over the

place, he was on insufficient calories, and it appears his body kicked into

defence mode, and started producing blood sugar thru' probably conversion of

muscle mass.

Have you checked blood sugars to see if something like this is happening

with ?

Will keep thinking...

ketones low at 5:1 ratio Patti?

> is 11 years old and has been on the ketogenic diet for 1 year

> now. As long as ketones are above 80 he no longer has myoclonic

> seizures and tonic/clonics are down to 2-3 per month. Recovery

> period almost non existent except for a 20 minute nap after tc's.

> Tremendous decrease in seizures after starting the diet (and most

> importantly after removing all meds 6 months ago). Diet wouldn't

> kick in until all meds were gone.

> Problem: at a 4:1 ratio his ketones slowly started to get lower so

> myoclonics returned in Jan. Same foods, I stick to 4 or 5 different

> meals, nothing new. All meals include a high amount of 35% cream.

> Everything is homemade using fresh produce and fresh ground meat,

> cream, olive oil. No nitrates, no sweeteners, no flavourings.

> Dietician raised ratio to 5:1 to drive him into deeper ketosis and

> this worked for a few months but his ketones are decreasing again

> even at 5:1 and myoclonics are back and he has tonic/clonics again

> every day and recovery period is longer again.

> I do give him .5mg ativan every bedtime since Jan., very low dose.

> Hate to quit the diet because it works wonderfully if we can keep

> ketones up. Its like his body is fighting the ketosis?

> Any suggestions, anyone? Thanks.

>

> Connie(mom to 11, myoclonics, tonic/clonics and 9

> and 6)

April 18, 2003

Hi , its been awhile.

I bet you're right. Its that darn medication again. Ativan is not an

AED though. Its a tranquilizer so I didn't connect with his previous

history with medications. I am becoming so loopy, is it only me?

I haven't been following the emails, it got to be too much but I

just went in and read some of yours. Sorry to read has been

in the hospital. Quite infuriating when you can't get them to

listen. As his primary caregiver you would think your suggestions

about his treatment would carry some weight.

So 's problems stemmed from blood sugar fluctuations.

Will check blood sugars more frequently as well to see if anything

is going on there.

As usual I'm grateful for your time and help.

If you think of anything else I'm all ears.

Take care.

Connie

> Hi Connie,

> Sorry has had a setback, I know things were going along

nicely for a

> while there - know THAT feeling!!!

> One thought I have, is maybe the one off dose each night of ativan

is

> causing rebounds during the day? It's half life may mean that once

the night

> dose wears off, he is now dependant on it, and the increase is

possibly from

> withdrawal each day?

> I know this isn't what started the myos off again, but it may be

stopping

> them resolving again?

> On the bright side - at least you know that if you can KEEP good

ketones,

> his seizures are fairly well controlled now?(poss benzo dependance

again

> aside that is).

> Maybe try restricting calories for a while to see if that helps

raise them

> again? Mind you if he is lanky, he probably has no body fat to

burn to

> produce them that way either.

> Not sure if you have followed or not, but 's loss of control

recently

> looks to have been kicked off by glucose levels fluctuating all

over the

> place, he was on insufficient calories, and it appears his body

kicked into

> defence mode, and started producing blood sugar thru' probably

conversion of

> muscle mass.

> Have you checked blood sugars to see if something like this is

happening

> with ?

> Will keep thinking...

>

> ketones low at 5:1 ratio Patti?

>

> > is 11 years old and has been on the ketogenic diet for 1

year

> > now. As long as ketones are above 80 he no longer has myoclonic

> > seizures and tonic/clonics are down to 2-3 per month. Recovery

> > period almost non existent except for a 20 minute nap after tc's.

> > Tremendous decrease in seizures after starting the diet (and most

> > importantly after removing all meds 6 months ago). Diet wouldn't

> > kick in until all meds were gone.

> > Problem: at a 4:1 ratio his ketones slowly started to get lower

so

> > myoclonics returned in Jan. Same foods, I stick to 4 or 5

different

> > meals, nothing new. All meals include a high amount of 35% cream.

> > Everything is homemade using fresh produce and fresh ground meat,

> > cream, olive oil. No nitrates, no sweeteners, no flavourings.

> > Dietician raised ratio to 5:1 to drive him into deeper ketosis

and

> > this worked for a few months but his ketones are decreasing again

> > even at 5:1 and myoclonics are back and he has tonic/clonics

again

> > every day and recovery period is longer again.

> > I do give him .5mg ativan every bedtime since Jan., very low

dose.

> > Hate to quit the diet because it works wonderfully if we can keep

> > ketones up. Its like his body is fighting the ketosis?

> > Any suggestions, anyone? Thanks.

> >

> > Connie(mom to 11, myoclonics, tonic/clonics and 9

> > and 6)

April 19, 2003

> Hi , its been awhile.

Hi Connie,

Yep, it has....doesn't time fly....

> I bet you're right. Its that darn medication again. Ativan is not an

> AED though. Its a tranquilizer so I didn't connect with his previous

> history with medications. I am becoming so loopy, is it only me?

Right there with you in the loopy department, I think I might finally be

coming back down to earth though......

Re the ativan, it is also known as lorazepam, just one more in the good ole'

benzo dept, so it carries with it ALL the addiction, tolerance problems that

the clobazam (I think clobazam with ?) has in the past for you guys.

It is more well known as a tranquiliser, like diastat (diazepam), but this

is just because it's use is usually more widely known as an emergency med

because it is so quick acting. To use it only once in a 24 hr period will

definitely bring about withdrawals after each dose wears off, once tolerance

is reached, which it certainly will have been, if you have been using it

nightly since January on a regular basis.

> I haven't been following the emails, it got to be too much but I

> just went in and read some of yours. Sorry to read has been

> in the hospital. Quite infuriating when you can't get them to

> listen. As his primary caregiver you would think your suggestions

> about his treatment would carry some weight.

Found out again the hard way, that there are 'ways and means' of making us

do the bidding of the Docs. The diet was practically ingnored in PICU, time

for the 'big guns', they said, ie-mega meds. Ugh.

> So 's problems stemmed from blood sugar fluctuations.

> Will check blood sugars more frequently as well to see if anything

> is going on there.

Well yes, we THINK so, and for the reasons that Jill and Patti have

explained better than I did...

We were becoming puzzled about 's progressive low muscle tone and

falling morn ketones prior to the loss of control, and it looks like this

question has been well and truly answered. 's blood sugar levels were

unbeknownst to us, going haywire, especially during the night, rising rather

than falling after not eating for a few hours. As we knew we weren't feeding

him in the night, the only explanation was that he was producing his own

glucose, through the defence mechanism that we are talking about here. The

more restricted the calories, and the higher the ratio, the more chance

there is of this happening.

A ree dx test (measures resting energy metabolic requirements) done in

hospital confirmed that he has been quite severely deficient in calories,

and an increase of 100 calories a couple of weeks ago SEEMS to have brought

this back under control for now. Another adjustment is on the cards for in a

few weeks time, but not sure yet whether this will be calorie or ratio.

It all actually hit the fan following the introduction of carnitine, which I

now think sped up his fat metabolism, leaving an even bigger deficit between

each meal. I also think the fatty metabolism of benzos was involved in the

carnitine 'disaster' as well, but the hospital pharmacist investigating this

for me has so far drawn a blank in his search for studies, research papers

etc available on this subject.

> As usual I'm grateful for your time and help.

> If you think of anything else I'm all ears.

I have a feeling you are facing a dual problem right now (welcome to my

world...), one a dietary one, two the same old benzo addiction/withdrawal

problem.

How experienced is your keto team, can you take this theory back to them

about the restricted carbs causing a paradoxical reaction? I have a site

sent from Jenn on the glucose defence mechamism tucked away somewhere, I'll

send it through when I find it, to help you understand the process a bit

better, because as Patti says, it is one complicated area. The endocrine

team that saw us in hospital agreed that this has proabably been happpening

with , and as this is their field, I feel pretty secure in the

knowledge now, that this is where all our problems stemmed from.

As far as the ativan goes, hate to say it, but I think you are going to have

to take a step backwards (again-like us). This may mean increasing his dose

to gain control of the meds side of things again, and then doing a gradual

taper to withdraw it. Alternatively, you could try splitting his current

dose throughout the day, with the hope of lessening the withdrawl periods,

but I suspect he will now need higher amounts to rise above the tolerance

threshold he has now probably reached.

Ativan is not a good regular AED, it has a fairly short half life, so you

may have to even look at going back to one with a longer half life to switch

to to complete the 'benzo' wean.

All this has to be done in conjunction with getting his ketones stable again

of course, so this may have to be achieved (yeah I know, easy to say) to aid

in the med side of things, more stability diet wise, should mean an easier

time of getting rid of the ativan.

> Take care.

You too, will send that info through when I find it,

> Connie

April 19, 2004

& Connie......

Can you see how this same scenario would be possible with inadequate protein and

carbs..... even if the calories were plentiful (or excessive)? Seems logical to

me, anyway. And as you increase calories for a kid who was not getting enough,

you naturally increase the overall amount of carb. , did you increase his

protein, too? Or was that fine where it was?

Patti

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