Tammy,
I am sorry to hear about your troubles... We have all been through
what you are going through, so we understand. My son mike, got the
VNS implant about 6 months ago. He had a slight improovement over
the first few months, but not a huge one; however, after about 4 to 5
months we seemed to find the right setting, he has been seizure free
for over a month. While i know you dont want to sit on your hands,
do know that things can get much beter with time... The keto diet, is
definatly an option that you should explore, but you should also
contact Cyberonics, there is a very high likleyhood that they can
help you as well.... Good luck with everything

Ben


--- In ketokids@yahoogroups.com, "Ashley Gill" <ashleygill@e...>
wrote:
> Tammy,
> Why don't you join the "ketogenic" list at yahoo groups as well?
There are
> lots of families that have been in the same position as you have.
There's a
> lot more traffic on that site also. As far as the keto diet goes, I
don't
> see that you have any other choice but to try. Send your story to
the
> ketogenic list and I'm sure you'll get some great ideas.
> ashley
> mom to Alex, age 5 former keto kid
>
> ----------
> From: "Tammy Taylor" <twoboys4@h...>
> To: ketokids@yahoogroups.com
> Subject: [Keto Kids] New Member
> Date: Tue, Jul 1122, 1220032002, 111:22 AM
>
>
> Hi,
> My name is Tammy and I have a son who is 7yrs old....with Severe
Intractable
> Epilepsy.
> There is no more medications to try.... and he is not a canidate for
> surgery.... and 3 months ago had the VNS implant put in.....with no
> improvement so far.
> The doctors before wanting to do the implant.... suggested that we
try the
> Keto Diet.... but after all the testing was completed on
Trey....and we
> found out that he suffers from a multiple birth defects syndrome...
mild
> mental retardation.. and CP.
> The doctors felt that Trey would not do well on the
diet.....because it
> would be too hard for him to understand the importance of the
diet.... I did
> agree.... He has a twin brother... who would be able to eat
anything...and
> then there would be Trey who couldnt.... Trey also sufffers due to
the brain
> dammage....suddden unexpected outburst..... He gets so angry at the
least
> little things.... and will hit, throw and yell....The doctors
felt...and we
> did get a second opinion.... that the diet... would be too hard for
Trey to
> understand and stay on.....There would be no way I could make him
eat what
> he didnt want tooo... and that is the part that scares me....He
also suffers
> from a Asthma, and a upper respitory disorder..... so there are
times he
> gets very sick....and will not eat or drink anything....
> So I really dont know which way to turn.... I am stuck... wanting
to help my
> son....but just dont know if forcing the diet on him....is the
answer
> either......Please Please.....let me know what you think.....
> Its sad to only be 7yrs old.....and have nothing else left to do to
help
> stop the seizures......
> He has 6 different kinds of seizures.... he has several a day.....
> Thanks for taking time to read my letter....... Tammy
>
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