Re: I'm Back-Gretchen

[Guest guest]

Hi Gretchen, welcome back and the very best of luck for the counselling

with Ethan. I read a little on the psuedo seizure thing when Danie's EEGs in

PICU last year were not always showing what we saw clinically, so I have a

small idea about what you are describing, but it turned out that 's

were in fact electrical seizures, just that the EEG interpretations were

sub-standard

So basically Ethan is 'electrically' seizure free courtesy of the diet,

(?) which of course is huge in itself, that is fantastic, and hopefully

these others will be gone soon too, and the 'prognosis being good' is really

nice to read. Good luck again

----- Original Message -----

> , I'm glad to see is successfully moving to a lower

> ratio. We are headed in that direction, too. It turns out that

> Ethan's daily seizures actually stopped a month or so after the diet

> started (other than the withdrawal from medicine seizures). What he

> is having now used to be called PsuedoSiezures, but they don't use

> this term anymore because it implies the kids are faking. I think

> they came on as a result of the stress of the diet. Being 11, it

> was very hard for him to start the diet, emotionally. Also, the

> med withdrawal was hellish, to say the least. He will start

> counseling this week to try to stop these daily episodes, which

> still are quiet debilitating, but at this point, the prognosis is

> good.

> Wishing you all well,

> Gretchen

[Guest guest]

Hi ,

So you've heard of 'psuedo siezures'. My husband dosn't really

think we have enough information to rule this episodes out as not

being seizures. They caught one during a 24 hour EEG a few months

ago. My husband thinks one data point isn't enough. But the doctor

saw one in his office, and noted that Ethan's eyes responded to a

flashlight, which apparently wouldn't happen if the episode really

was a seizure. Also, we can bring him out of it by tickling him,

which makes him go into a furry, quite scary except that he is so

small and harmless looking. After the rage, he falls back into

silence, only to wake a minute or so later completley happy and

oblivious to the anger he felt. The episodes are most often

triggered by a suggestion that he do something he doesn't want to

do. He will stay frozen and silent for up to 30 minutes, unless I

say " OK Ethan, we won't do math right now " or whatever words

triggered the episode. Immediatly he comes out. But he doesn't know

what I said to bring him out. I mean, he will just start working on

his math. It's odd, I know. I know it sounds like he is faking, but

he really isn't. If Frued hadn't already described the

subconscious, I think I would have been it's discoverer.

Did you ever take the leap and get a puppy? They are a lot of

work, but our dog is worth every bit of work, considering what he

gives Ethan. A few weeks ago Ethan and Hank (the dog) got first

place in our little local dog show for doing tricks. It was not a

serious event at all, just a fun little gathering. But when they

took Ethan's picture for the newspaper, Ethan said, " I didn't even

have to pretend to smile; I was already so happy! " He has never won

anything in his life! What a reward, after everything he has been

through. No one in the crowd knew about 'the diet', and since I was

smiling even bigger than Ethan they must have thought we really took

the dog show seriously. Anyway, what I really meant to say here is

that I can't wait for you to get a dog!

Gretchen

> Hi Gretchen, welcome back and the very best of luck for the

counselling

> with Ethan. I read a little on the psuedo seizure thing when

Danie's EEGs in

> PICU last year were not always showing what we saw clinically, so

I have a

> small idea about what you are describing, but it turned out that

's

> were in fact electrical seizures, just that the EEG

interpretations were

> sub-standard

> So basically Ethan is 'electrically' seizure free courtesy of

the diet,

> (?) which of course is huge in itself, that is fantastic, and

hopefully

> these others will be gone soon too, and the 'prognosis being good'

is really

> nice to read. Good luck again

>

>

>

>

>

> ----- Original Message -----

> From: " gretchen_kissock "

>

>

> > , I'm glad to see is successfully moving to a lower

> > ratio. We are headed in that direction, too. It turns out

that

> > Ethan's daily seizures actually stopped a month or so after

the diet

> > started (other than the withdrawal from medicine seizures).

What he

> > is having now used to be called PsuedoSiezures, but they don't

use

> > this term anymore because it implies the kids are faking. I

think

> > they came on as a result of the stress of the diet. Being 11,

it

> > was very hard for him to start the diet, emotionally. Also,

the

> > med withdrawal was hellish, to say the least. He will start

> > counseling this week to try to stop these daily episodes, which

> > still are quiet debilitating, but at this point, the prognosis

is

> > good.

> > Wishing you all well,

> > Gretchen