Hi, Jessica. My name is Stephanie and my 3 yr old son Noah has myoclonic-astatic
epilepsy (MAE) also known as Doose syndrome. His seizures were tonic-clonics
(grand mals), drops, jerks, stares, and twitches, and he would have up to 200 or
more a day. They started in November of last year & we began the diet in March
of this year. We had only tried one medication before the diet. Currently he is
almost completely weaned from his medication and will only be on the diet. He
has been seizure free since starting the diet. It has been over 4 months now. It
is also 100% easier than everyone made it out to be. Hopefully you have a good
dietician that you can be in contact with easily. That made all the difference
for us. We also are connected with a great webgroup of other Doose parents and
many of them are on the diet. Other people's experiences are so valuable!!

Any questions, please ask away! I am interested in how you will begin the diet
without ketosis, as the whole point of the diet is to be IN ketosis. Many kids
start the diet and are very sick, but it gets better. It is a whole lot better
to be sick a short while in the beginning rather than continue the horrible
seizures!! Are you starting the diet in the hospital? Where at? We can offer up
many suggestions for you. How is your son's cognitive abilities? Hope we can
help!

Stephanie
Mom to Noah, age 3 & seizure free on the ketogenic diet

Jessica <frggy129@...> wrote:

hi my name is jessica i have a 5 year old son with menkes disease and
we are starting him on the ketogenic diet for seizures this week. he
is G tube fed. i was just wondering what results anyone has had with
the diet. and how affective it is. and any other information that
would be helpful.
when he was 2 years old we were going to start him on the diet and
when they tried to get him to keytoses he got really sick so i told
them to stop it. this time their not going to get him to keytoses
their just going to start him on some formula and were hoping that it
will help with his seizures. he has about 20 to 40 seizures a day.
their like spasms. and weve tried just about every medicine you can
think of. so were going to pray that the diet is the answer. any
suggestions or anything would be helpful. i am very scared to try
this again. so any positive feedback will also be helpful please.
thanks ;)
jessica and jordan


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