Hi, Jean- I'd like to encourage you- we all do know this is hard, but I do hope
you notice improvement while your son is on the diet. My son Noah is 4 and has
been on the diet for over 15 months now. He is seizure-fee and med-free as well.
Where do you go for treatment? Is it your neuro's goal to become med-free?
Sometimes the diet works so much better without the meds, and then you'll also
see so many less side effects- the meds are usually what cause the regression,
not the seizures. But, I do know many kids that are better off on some
medications. It's different for everyone.

I did want to mention the other yahoo ketogenic webgroup that has hundreds of
members and is very active- you may find a lot more help- and I think a newer
family just moved to the East from Hawaii, too! They weren't getting the help
they needed in Hawaii. I think they might be at Johns Hopkins doing the Atkins
diet first, then might try keto. To find the webgroup, just search ketogenic
diet on yahoo groups- it's the one with lots of members.

I know the diet can be stressful on the family, but you have to stay strong! I
don't allow any family or friends to "make over" Noah or feel sorry that he
doesn't get to eat what we eat, etc. I make what he can eat FUN and he has
adjusted wonderfully!! If your son isn't enjoying the meals, you should ask your
dietician to make some meals that he might like or might be similar to what the
family eats. We go to restaurants and other functions just like normal people,
we just take along his little cooler with his "special diet" food. It's fun for
him to eat off plates at restaurants and you can even order olives or lettuce
that he can have there... it does take some time to get to that point and some
adjusting... I do wish you the best!

Stephanie
Mom to Noah- age 4, med-free, & seizure-free on keto



jfiaseu2004 <jfiaseu2004@...> wrote:
Hello,

My name is Jean and I have a 5yr old boy who just started the keto
diet in Jan of this year we have recently moved here from Hawaii Sept
of last yr we actually came here to see what they were gonna do but
come to find out he wasnt a candidate for brain surgery because they
say his seizures are not in one spot of the brain more like called he
has Focal Multi discharge spikes I hope I said it right there is just
too many things to remember anyways my son started having seizures
when he was 2 months old and was diagnosed with epilepsy when he was
1 we are a polynesian family my son is Hawaiian and samoan father
hawaiian and myself samoan this diet is really a challenge for us
especially with the eating my son is still on LAmictal and Depakode
my son has been in and out of seizures hoping that some day he will
be seizure free but still keeping up the faith as of today he is on a
400 calories per meal 3.1 ratio yes its really hard especially seeing
your own child crying that he is still hungry well my son is 5 but
his mentality is of a 15month-22month child regresses when he has
seizures still in pull ups and toilet training shaking when walking
before he had no fearof anything now he is scared to walk down the
stairs or in to a puddle of water but enjoys saying Hi and eat over
and over everyday wakes up to these words and goes to sleep with
these words well I have read so many stories about this and its very
helpful cause I know we are not the only one s going through this but
what really hurts is to see people look at my son weird when he
repeats himself by saying Hi one man replied is that all you can say
but for me did not want to start trouble so just walked out of the
groceri store we dont eat out no more and when we past Mc Donald or
other fast foods he cries out eat when we say he is on the magic diet
he cries out why why why I hope that one day he will understand that
we were not starving him just because but it was to make him better,
Well I better stop I might be going on to long but its nice to know
that there are people out there that knows whats up.

Jean




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