Dear Darian's mom,

My son has been on the diet for over two years now and during that time his
blood ketones have been check only a few times. We check him almost daily with
keto stix, which checks for ketones in the urine. DJ, my son, has been seizure
free for over two years now and he too was diagnosed with Lennox Gestalt
syndrome. He is on a 4:1 ratio.

Does Darian have any other symptoms of acidosis? Is she on Topamax? Topamax
can also lead to acidosis.

I have no clue as to why you need to wait a month to check ketone levels, that
does not ring true to me. Go buy some keto stix at the pharmacy and check
Darian's urine to see how high the reading is. It should of course be in the
high range.

If you are not happy with how the diet is being run, get a second opinion.
Our children are too precious to "wait and see".

Good luck, and perhaps with a little more tweaking Darian can become seizure
free and drug free.

DJ's mom

darian_alexis <darian_alexis@...> wrote:
Hello everybody. I just joined this group. My three year old
daugther Darian had her first seizure last year on Memorial Day
weekend, and things have gotten worse ever since. In December she was
diagnosed with Lennox-Gastaut Syndrome. We tried all the drugs but
with little success. She started the diet on May 8, 2006 and had
AMAZING results. Her seizure activity went from between 60-100/day to
less than 5/day. Unfortunately, her first blood draw showed that her
ketones were at 6.5. Our doctor says that the ketones need to be
between 4-6, so she was too ketotic. As a result, we have to reduce
her ratio from the initial 3:1 to 2.75:1. About two weeks after we
made this change, her seizures have started to return. We are anxious
to check her blood ketones again and see if they came down too far,
but the doctor says we have to wait a month to get reliable numbers.
Does anybody have any experience with this issue? We are hopeful that
this is just a minor setback, but we are very concerned. Any insight
would be greatly appreciated. Thanks!

Darian's Mom






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