Shannon:

Has your doctor discussed decreasing the dose of Lamictal? I have been
researching Darian's drugs and you probably already know, but lamictal can cause
nausea and vomiting.

Sometimes, as with DJ, increasing medication only made the seizures worse.
Perhaps if the lamictal could be decreased by your doctor, the vomiting would
lessen and Darian could tolerate the diet better. Her ketosis would probably
drop down to the acceptable range as well.

Just some thoughts on the matter. I always worry, when the docs start
increasing medication and the seizures increase too.

Warm regards, Thelma

darian_alexis <darian_alexis@...> wrote:
Thelma,

Thanks for the encouragement. Darian has really been struggling
these last few days. We have increased her felbmate 300 mg in the
past two weeks, and now she is struggling to sleep. Despite the
increases in medication, her seizures are still getting worse. I
really think that the diet is (was) working for her so I am anxious
to make some changes. Waiting is very difficult.

Shannon

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






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