Noreen:

The diet is very is to learn and with the feeding tube (mic-key) it will be so
much easier.

My son has been on the diet since he was 4. He will be 7 in May. He too has
a feeding tube. He eats, but the tube has been used for medications and his
fats.

Because of the feeding tube, I am able to give all of his fats in the form of
extra virgin olive oil. The oil is so much healthier than other types of fats.

DJ eats what he wants and the rest I would just blenderize to a very soupy
mixture and then put that through his tube as well. Monterey jack cheese works
best for this as it is higher in fat and protein and lower in carbs than most
other cheeses. It also melts great.

Most of the time hospitals will send you home with 6 or 7 "generic type
meals". A protein, a veggie or fruit, and fats. I highly recommend purchasing
and reading The Ketogenic Diet A Treatment For Epilepsy, the 4th edition is out
now. The third edition was written by Dr. John Freeman, Jennifer B. Freeman and
Millicent T. Kelly, Rd.D., L.D. The book is wonderful for explaining in great
detail how the diet works, what to expect from the diet and how to trouble shoot
while on the diet.

After a few days of weighing everything out, you will soon get the hang of it
and be able to whip out a meal in a few minutes. If your son is anything like
my son, he will eat the same thing for a week and then switch to something
different. But while he is eating the same meal over and over again, I would
measure out the food for the next few meals, and then I would have it already.


The cost of the diet is minimal compared to medications. Check with your
accountant, but it may be possible to write off some of the foods as medical
costs.

We spent over $15,000.00 in 18 months (out of pockets) for medications and
co-pays. Since DJ has been on the diet he is now off all seizure medication and
hasn't been to the hospital for any seizure related reason. The diet has saved
us seizure-wise and financially.

Perhaps your state has BCMH (Bureau for Children with Medical Handicaps).
Check with your health department as they would be able to assist you in filling
out the necessary paper work.

I wish you and your family great success on the diet. With a little
imagination and a willing dietian, the diet is very doable and not "yucky" at
all. Please keep us informed on your son's progress. If you have any specific
question, I'll try to help the best I can.

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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