RE: keto diet and focality

[Guest guest]

Steve,

Our 8-year-old daughter, Shan, was diagnosed with complex partial seizures

coming from the rt. frontal lobe. An MRI did not show where they were

originating from. We have not done any further tests but after reading your

post there is a strong probability that hers come from a deep point. After

several failed med trials we tried the diet (instead of pursuing surgery)

and have been getting great results. Shan has been on it for 19 months.

She use to have 20 seizures just trying to fall asleep. She was having 1-3

drop seizures every 3-4 days. After the first 3-4 months on the diet the

awake seizures resolved. Her sleep seizures eventually improved to where

she was having 1 every 3-4 days. We are having the best results yet with

this last month having possibly only 1 seizure (we haven't heard a seizure

in over a month and if she is having any silent ones they are very difficult

to detect and are not affecting her day life). She is nearly off all

medication. She takes a minute amount of trileptal (225mg) at night which

stays in her body for about 8 hours and does not give her side effects

during the day. This is for her sleep seizures. We tried weaning it

completely but the sleep seizures came back with a vengence. With how well

she has been doing the last 2 months I have hope that we will eventually be

able to wean the rest of it successfully. At this point it is definitely

not a priority. Her success comes after working hard at tweaking the diet,

eliminating possible triggers (grains, aspartame, processed foods, dyes.)

and discovering triggers which we then eliminated (lactose has been a

trigger which we discovered a couple months ago..she's lactose

intolerant.her sleep seizure immediately went from 1 every 3-4 nights to 1

every 6-7 nights when eliminated). All in all, there is no way we can

predict how your daughter will respond. Studies cannot predict (though they

try). Kids with all types of seizures have had success with this diet. The

only way to find out is try it and use this group's experience to help you

tweak and sleuth to get the best success possible. I will admit that our

success has come from this groups help.

Rhonda (mom to Shan, age 8, keto kid for 19 months)

Hi all.

our 7-year-old daughter had a 3-day video eeg in august and a PET scan in

september. the results of the PET scan suggested left temporal mesial

sclerosis. this was done and interpreted in detroit. our doctors here in

chicago have gone back through the VEEG and are performing something called

a curry analysis. the curry analysis is suggesting a deep left frontal lobe

focal onset. at some point soon an MRI will be done (higher res and thinner

slices) to confirm one diagnosis and refute the other. and after that, of

course, will come 2nd and 3rd opinions.

my question is this: does anyone have experience where the ketogenic diet

has been used on children who do have a deep focal onset. if so, how did the

diet work? we have been researching the diet and are not afraid to try it.

any advice would be greatly appreciated.

thanks in advance

steve