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.







[Non-text portions of this message have been removed]