Kim,
My son, DJ, was diagnosed with Lennox Gestalt when he was 3 years old. The
ketogenic diet has given us back our son. He was having up to 100 seizures a
day, even though he was on close to 20 pills a day. He started the diet 5/24/04
and 10 days later 6/02/06 he was seizure free! This past December he became
drug free.

He will start weaning of the diet this December. I pray you have the same
success!

At our hospital:
When you start the diet, the dietitian will send you home with about 7
different meals. After about 6 weeks, the dietitian will add additional choices
to the meals. However, breads and cereals are not an option.

I do recommend, once AJ is seizure free, that you request your neurologist
write you a prescription for the software to design AJ's meals. This software
can be purchased from the Chesapeake Region Epilepsy Foundation
300 E. Joppa Road, Suite 1103, Towson, MD 21286-3018. Two years ago it cost
$80.00.

The software enables you to design meals specific to AJ. DJ now has over 400
different meals.

The below link is a site where you can obtain the exact nutritional make up of
just about every kind of food. My program allows me to add additional foods.
http://www.nal.usda.gov/fnic/foodcomp/search/

Once AJ is seizure free you can experiment a little with his meal options.
For instance DJ can go to McDonald's and get a plain hamburger (28 grams) and
about 4-5 fries (up to 3.18 grams up carbs) He also gets an ice tea and the toy
with the happy meal. (I take my scale with me to weigh out his food).

Life is good. . . . now. DJ also has a mic-key. It is a tube that goes
directly into his stomach from the outside. (he would have seizures every time
I tried to give him his medication and we were afraid he would choke, the tube
allows us to give his oil and fats directly into his stomach so that he does not
have to swallow them).

I would highly recommend the placement of this tube for anyone going on the
diet. Initially it was a very difficult decision to make since it did require a
surgical procedure to place the tube. I can honestly say, the tube has made
this diet hassle free. Any foods that DJ did not want to eat, I blenderized and
gave it to him through the tube.

I wish you great success on the diet. It has given us back our son and our
lives. Thelma



Kim Carpenter <katsinvista@...> wrote:
Hello Everyone,

I am new to this group. My name is Kim and I am the mother of 2
children. Janet is almost 3 and AJ is 7. AJ has been diagnosed with
Lennox-Gastaut Syndrome (an uncontrolled mixed seizure disorder)
which lands him in Children's Hospital every other month or so with
status epilepticus. AJ was diagnosed with epilepsy at age 14 months,
has tried numerous anti-convulsant medications (currently on Keppra,
Lamictal, Zonegran and Felbatol). AJ also has a VNS (Vagus Nerve
Stimulator)implanted in the left side of his chest, near his heart.

AJ is going to be hospitalized at Children's Hospital in San Diego,
California in the near future to implement the Ketogenic Diet and I
desperately need some information regarding recipes, name brands of
low carb. foods, (where to get them) like bread and cereals, what
works, what doesn't work, and the name of the sugar substitute used
on this diet.

I belong to another group for my daughter, called Oceanside Stay At
Home Mom's and wondered how I change my email address on my yahoo
profile so the Ketogenic diet emails come through to my Cox
Communications address? Any assistance is greatly appreciated.

Thank you for your time and consideration.

Sincerely,

Kim Carpenter






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