Re: Ketones Sky High?

[Guest guest]

HI ,

Don't let yourself get too discouraged, I do think that things

will be alright for Skyler. First of all, early control is a good

sign (And you had it for 6 months!) I'd be willing to bet that

Skyler's current seizures are related to the med wean 100%. Often,

seizures get worse as the meds go lower, only to go away completely

when the meds are gone. Many in this group have found the last few

steps the most difficult when weaning meds.

My son had similiar seizures to Skyler's new ones. They started

as we were lowering meds before starting keto. He convulsed,

relatively mildly, sometimes just half his face, sometimes his whole

body. And he was always fully aware during them. It was sort of a

blessing right before starting keto, because being aware of the

seizures and their convulsive nature, he did not like them at all.

If you hadn't mentioned the pheno drop, if the seizures had just

come out of the blue, I would have been worried for Skylar. But

considering what's happening with the meds, you have all the reason

to hope for return to complete siezure control.

My advice is for you not to stop the wean. You might even ask

if a more rapid wean would be possible, though the thought can be

scary.

Gretchen

> We are having an awful time, here w/return of day time seizures

after six

> months of control. Have been monitoring blood ketones on and

off...they're

> always fine. Am blaming the return of these seizures as well as

ten-fold

> increase in nocturnals on our latest phenobarb wean. (Quick

history on the wean:

> We've successfully cut the dose in HALF yet have not seen a level

change

> until the last drop about 2 1/2 weeks ago.)

>

> Now, Skyler's just been brought home from school after his biggest

seizure

> yet during the day...and his blood ketones are off the

> chart...literally...higher than they've ever been.

>

> COULD HIS KETONES BE TOO HIGH?? He's got no other symptoms of

hyperketosis,

> though.

>

> Also....CAN ANYONE IDENTIFY THIS SEIZURE TYPE: It is new and

foreign to us.

> It looks like his whole face is in complete convulsions--both

sides. His

> limbs don't move...he doesn't drop anything or fall...and he is

totally

> cognizant of the seizure...a bit 'foggy' afterward.

>

> Any help will be greatly appreciated.

> I'm so distraught....

>

> Tracey

>

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