Noreen,
A great site is called Matthewsfriends.org it is uk based but lots
of resources and helpful people there too.

Rose


--- In ketokids@yahoogroups.com, Thelma Fosselman <thelma@...> wrote:
>
> Noreen:
>
> I forgot to mention the most important aspect of the diet and
that is attitude!
>
> Have a positive attitude and be very optimistic as this diet has
been a miracle treatment for many children. Along with attitude is
diligence. Measure everything precisely and don't slip extra food
in. The first few days may be rough, but once your son enters
ketosis, his food cravings and most of his appetite will go away.
>
> Again, best wishes. Thelma (DJ's mom)
>
> noreen_funk <sr2692@...> wrote:
> Hi! This is all new to me. Ususally have my daughters
help me out
> with computer skills. Hope I am doing everything right. My 12 year
> old son developed an illnes May of 2005 which led to encephilitus.
> He had 9and 1/2 hours of status epilepticus and spent a month in a
> coma. He spent the next 3 months relearning how to do pretty much
> everything. He has been left with complex sz.'s. He has come a
> long way, but needs emergent respiratory assist while seizing as
he
> stops breathing . He has gone through alot of medications in the
> past year and a half, and had debilitating side effects (Stevens
> Johnsons rash, etc)with them. The medications haven't controlled
> the seizures, and we have found ourselves around another bend and
> are now facing the ketogenic diet as our neourologists have stated
> as a last resort. We have been to many hospitals, Dr.'s, etc. Our
> son goes into the hospital this month to get a stomach tube
> (feeding) placed due to eating complications from medicine
effects.
> Then in Feb. we will be taking him out of state to get him placed
on
> the ketogenic diet. I cannot believe how much our lives have
> changed. However, it has brought us out of our comfort zones, and
> made us stronger and closer. I am here in an attempt to educate
> myself , my 2 daughters, and my husband on the diet so as to give
> our son every chance possible with this therapy. I understand the
> diet and basically how it works, however, that is as far as
anybody
> has taken us. We know he will be on the diet with oral and liquid
> feeds for when he cannot eat.I have been told that upon entering
the
> hospital when he is started on the diet we will be educated on how
> to maintain it for him. My fear is that if it isn't thorough
enough
> we are up river as they are out of state after we are home. I have
> spoken with the nutritionist and she seems like talking with an
old
> friend so this is a plus. But preparing the meals seems vague. Or
> do they tell you exactly how to do that as well? So nervous, as we
> have tried so many other things that have failed. Really want to
> get this right for him so am here in hopes that the veterans that
> have gone on before us could offer some guidance. Also We have
gone
> through this entire journey with NO outside resource help
> (financially)---as every one has continually give un the run
> around. How expensive is this diet?
> Thank you for your patience with my email and any help , I am sure
I
> sound like I am rambling on and on....just want to get this right
> for my son.
>
>
>
>
>
>
>
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>