Hi Shannon!

DJ started having seizures when he was 3 1/2 years old (on 9/30/03). It took
us until 05/24/2004 to get him on the diet (he had just turned 4). During that
time we tried several drugs, all non effective and all with severe side effects.
Now that he has been seizure free for over two years, we are talking of starting
to wean him off, very, very slowly, perhaps in September. I am very nervous
about this, but DJ is very excited to begin to eat more normally (I can not
blame him!)

Ten days after starting the diet, he was seizure free (06/02/2004) We have
been truly blessed.

I am sure Darian will do just as well as DJ, once her body gets used to this
strange way of eating! She was almost seizure free on the 3:1 ratio. I think
that is terrific!

Will the doctors start weaning her off of some of her medications soon?
Perhaps, she might be able to tolerate the diet better. I am thinking that if
she was throwing up a bunch, that could have really sent her ketosis throught
the roof. I know you must be anxious to get her back up to the ratio that will
make her seizure free, but just think of how well she is doing now, even if her
seizures are back, You know the diet works for her, all it is going to take now
is a little more time for her to adjust.

please keep me posted on how you guys are doing. Thelma (DJ's mom)


darian_alexis <darian_alexis@...> wrote:
Thanks so much for the reply. Congratulations on your son's
response to the diet. That is absolutely fantastic! We are hoping
for the same.

Darian is not on topamax. She takes felbmate and lamictal. As far
as other signs of acidosis, she is a bit shaky on her feet and
vomits at least one meal a week. She is also quite pale in color.
We do use keto stix to test her urine twice a day, and her ketones
are always very large. Our doctor has told us that blood ketones
are more accurate than urinary ketones so she gets her blood drawn
once a month. After the next draw, we may be able to make
additional changes in her diet.

Darian had a very difficult time tolerating the diet when we
instituted it. She threw up everything for 3 1/2 days in the
hospital. I think she just has a very sensitive system. Plus, the
poor kid is on enough medication to make anybody sick. We are
hopeful that her body just needs a more gradual introduction to the
diet. It has worked miracles for her seizures, but has also been
hard on her little body. I have no doubt that she would be seizure
free on 4:1 ratio, but I don't think she could function at that
level, at least not yet.

How old was DJ when you started the diet? Our epilepsy center
informed us that they do not start three year old children out on
4:1 because their bodies just can't take it.

Thanks again for the response, and I wish you much continued
success!!! Any talk about how long DJ will remain on the diet?

Darian's Mom (Shannon)

--- In ketokids@yahoogroups.com, Thelma Fosselman <thelma@...> wrote:
>
> 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
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>






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