Re: decline on diet/Cammie>

[Guest guest]

That's my thinking too Cammie, that producing the ketones doesn't neccessarily

mean he is able to use them effectively metabolically as an alternative to

glucose. His weight gain with lack of any height growth over the past yr looks

suspiciously like he is storing a lot of the caloric fat intake, perhaps not

able to use all of it for energy or growth as they are s'posed to.

He must be burning thru enough fat to actually produce those ketones though,

and if the ketones have helped with seizure control, it may be a totally sep

effect to the possible regression in other areas. Like the resultant ketones are

working as an anti epileptic agent, but the process of the fat burning to

produce those ketones isn't giving him his energy needs at the same time because

of some possible glitch in his metabolic make-up.

Ugh, that went round in circles, but I think I know what I mean

He also improved seizure wise after his lamictal was weaned didn't he

? Maybe some level of improvement would have been seen whether or not he

was on keto, because I think you felt that the lamictal may have been

aggravating his myos?

It is all a bit (actually make that a lot) above me - this metabolic

business, but people trained in this speciality would probably have some answers

for you fairly swiftly I would think.

You do obviously have the problem in the meantime of weighing up whether he

will start seizing if you reduce his fat content against the possibility that

his present diet is possibly as Cammie said, not just mimicing starvation, but

actually literally starving him of nutrients etc he needs to grow and develop.

(similar to what happened with when he went catabolic).

On the plus side - if he does have a definite diagnosable fatty oxidation

disorder, many of them from what I have gleaned appear treatable with diet, just

not the one he is on right now. If they can find what is 'missing'

metabolically, if anything at all, and treat accordingly through correct dietary

intervention, then the seizures he started having as a baby from 'whatever'

disorder he may have, could well be preventable. Meaning he may have no need for

those ketones that at this point could be helping him in an anti epileptic

fashion. Ugh, more circles, I hope that made sense - pre Xmas brain mush

happening here...

It may turn out to be nothing of course.....in which case you're back at

square one again, but at least you would have eliminated a lot of possibilities

in the meantime. That carnitine profile will get a result on one side of things

fairly rapidly (unless you guys are like here where it can take anywhere from 7

days to 3 months to get a result, ugh, they have to be batched and sent to a

diff lab), as it looks like it gives a good overall picture on the fatty

oxidation process side of things.

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

From: cammie562003

Yes, it seems that if he's making ketones and his seizures have

improved (that's the one glitch in this picture from what I can try

to figure out--cos they shouldn't be greatly improved). However, I'm

thinking if the glitch could be on the " using the ketones " side of

the equation rather than the " making ketone " side.... he could be

making all the ketones he wants but if his body can't " burn " them,

then essentially he is not getting the energy he needs from his

foods. Same scenerio as a diabetic who has load of energy in the

form of glucose in his blood but can't actually utilize it.