Heather,
what state do you live in. I can find a hospital for you that will put your
little one on the diet. There are specific ratios that have been found to work
best for seizure control.

You can also e-mail Dr. Kossoff at Johns Hopkins in Baltimore Maryland. He
does take out of state patients for their programs. I know they are currently
enrolling patients for a study on the benefits of the Adkins diet to control
seizures. All medical care is given free, you just need to be able to get to
the hospital 3 or 4 times for check ups.

Please do not try to go this alone. Find a neurologist who will make you a
partner in the care of your child. You know your child best. The ketogenic
diet has been a miracle for my family, but I would not have gone on it alone.
Acidosis can be a serious, life threatening thing.

I admire your advocacy for your child, but please seek out a neurologist who
will work with you. Thelma

Heather <heatherathome2005@...> wrote:
Thank you, and yes I am doing it on my own. I am not restricting her
diet too much, basically no sugar, low carbs (100g per day), high
protein, lots of fruits and vegies with special attention to food
combinations...and what time of the day she eats her carbs. I will
adjust the diet as I think is needed.....all with the help of a
nutritionist in the family.

It is unfortunate that her pediatric neurologist will not help me.

I will look into the acidosis.

Thanks,

Heather

--- In ketokids@yahoogroups.com, Thelma Fosselman <thelma@...> wrote:
>
> The Topamax and the diet can lead to acidosis. I am not sure of
all the signs and symptoms of acidosis, but should she get confused
or lethargic, you should probably call the doctor to let them know.
>
> The diet can cause a fatty liver, but I believe this is rare and
of course it can cause high cholesterol, but I figure we can cross
that bridge when we come to it.
>
> I believe Topamax is filtered through the kidneys and so it will
not have a huge impact on the liver. Just make sure your little one
drinks as much water as prescribed so her urine doesn't get to
concentrated, which could lead to kidney stone formation.
>
> I wish you and your little one the best of luck on the diet and
may she soon be seizure and drug free. Thelma
>
> Are you starting the diet on your own?
>
>
>
> heatherathome2005 <heatherathome2005@...> wrote:
> Thank you so much for your reply. I have started the Atkins diet
and
> will slowly wean her off of the Topomax ~ I hope. I noticed that
> once she got up to 400 mg per day, she was so out of it. She is
> nomaly a very bright, energetic child and she was having trouble
> concentratng. It broke my heart. I would rather deal with the
> seizures.
>
> One thing I am curious about is what taking the Topomax and being
on
> the diet could potentially do to her liver and kidneys. Am I
> worrying needlessly?
>
> I am so happy that your son is doing well, it is much needed
> encouragement right now. I will definatly get a hold of Dr.
Kossoff.
>
> Thanks again!
>
> Heather
>
> --- In ketokids@yahoogroups.com, Thelma Fosselman <thelma@> wrote:
> >
> > Heather,
> > please do not stop the medicine althogether. She needs to be
> weaned slowly from it.
> >
> > My son, is on the ketogenic diet. He has been on it two years,
> as of tomorrow. He was diagnosed with Lennox Gestault and was
having
> up to 100 hundred seizures a day. He has been seizure free since
> June 2, 2004 (10 days after starting the ketogenic diet) He has
been
> drug free since this past December.
> >
> > Prior to starting the diet, he was put on Topamax. He was
taking
> 14 pills a day and still having up to 100 seizures. The docs
wanted
> to continue to increase his medication, but the drug made him,
> autistic, psychotic and he regressed to that of an 18 month old.
> Since being on the diet he has regained all his lost developmental
> skills and is a happy six year old.
> >
> > The ketogenic diet, although is very strict, is also very do-
> able. I have been designing my son's meals for about 18 months now
> and although his ratio is still 4:1 (4 fats to every 1/2 protein
and
> 1/2 carb) I can give him a bigger variety of foods because I have
> the software from Johns Hopkins hospital.
> >
> > I highly recommend the ketogenic diet. Go to the Johns Hopkins
> web site. Dr. Kossoff is currently doing a study and enrolling
> patients to try out the Adkins diet.
> >
> > Please look into the diet options. I would be happy to share
> recipes and help in any way. I hate that we have to drug our kids
to
> treat seizures. My son now has a bright future, because he is
> seizure free and off the anti seizure drugs.
> >
> > heatherathome2005 <heatherathome2005@> wrote:
> > I have found this site very informative and I thank everyone
for
> > sharing. My daughter is 9 and was diagnosed with absence
seizures
> a
> > year ago. She is on her second medication ~ Topomax. She takes
> 400
> > mg daily and is still having seizures. I decided to stop the
> > medication and am researching Keto and Atkins.
> >
> > Keto seems very intense. I am wondering if the Atkins diet is
just
> > as beneficial in controlling these types of seizures.
> >
> > If anyone has any tips, please let me know. I would like to
bypass
> > the starvation and hospital stay if at all possible.
> >
> > Also, is just stopping her medication okay? Her Dr. at UCSF (who
> is
> > wonderful by the way) doesn't even entertain the thought of
> stopping
> > medication, he just suggests upping the dose and/or switching
meds,
> > so I am on my own I guess.
> >
> > Thank you,
> >
> > Heather
> >
> >
> >
> >
> >
> >
> >
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> > [Non-text portions of this message have been removed]
> >
>
>
>
>
>
>
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