Re: please help Carlie Jae nightly seizures and daily seizures

[Guest guest]

Robyn-

We have been unsuccessfully dealing w/sleep seizures for over ten years...and

are now on our third go-round w/the diet.

During the first two-year rounds of the diet, nearly a decade ago, monitoring

urine ketones was *the* way to check the efficacy of the diet. Now, it is

known that urine keto levels alone aren't necessarily the best measurement of

either ketosis, or of the diet's ability to succeed.

So we have started monitoring blood ketones as a better indicator of ketosis.

Some of the newer studies on the keto diet indicate that a blood ketone

level of 4-10 may be necessary for full, if not better seizure control.

Every two months we are testing Skyler's blood ketone (or

" betahydroxybutyrate) levels. We are also using a home blood ketone monitor

(which registers

lower than a lab test because it's testing capillary vs. venous blood). We use

the monitor to then 'tweak' his ratios...which are substantially higher now

that they've ever been on the diet in the past.

Just recently, we finally (after four months of changing ratios AND calories)

are seeing higher blood ketones. And amazingly, we are also seeing

improvement in night time seizures. This week we had one night of no

seizures....I

think this has happened maybe three or four times in the 13 years Skyler has had

epilepsy.

Maybe getting Carlie Jae into higher levels of ketosis might just help her

sleep seizures. Surely would be worth a try.

Tracey