Re: to Gretchen

[Guest guest]

Dear Gretchen

When 's ketones get really high she laughs and laughs. It is totally

obnoxious, but she cannot stop and it goes on until she is given something

(apple juice) to bring them down. When it first happened I had no idea what was

going on. It has happened a couple of times since then. Would that be anything

like what Ethan is experiencing with the uncontrollable " ok " do you think?

Just an idea. You may want to check his ketones during those strange episodes.

For , hers were super high (dark immediately) and she laughed and laughed

and laughed. It was crazy!

Also, she had a hard time with attitude/mood on lowered ratio, so you might want

to watch for that. Only , 's mother, said she knew it could

happen because the lower ratios were hard on , too. Maybe it wasn't just

the ratio with my daughter, as she went through a seizure episode after being on

the lowered one for a while, and sometimes that is building up before it

happens...

You are experienced with the diet and know more than I do, but I just wanted to

share so you can consider our experiences. Thanks for " listening. " ,

's mumma.

gretchen_kissock gretchen_kissock@...> wrote:

Hi ,

Thanks for thinking of us. We had good news last week, in that

Ethan's EEG was very good, almost normal. The doctor feels he still

needs the diet, which we expected, but he feels thatEthan will out

grow his seizures (a first for that suggestion). We think the

tremors are from low Mg, since blood levels were slightly low.

There could also be a pyschological component to them, too. A result

of the physcial stress his body is under on this diet and the mental

stress, too, I guess. To help with that aspect, his ratio was

lowered to 2.5:1. So, we are feeling very optomistic again.

These are odd episodes, though. Yesterday he had one where he

kept saying " OK " every 4 seconds for about 30 minutes. He couldn'lt

stop. He could laugh, and talk a bit between " OKs " , but he couldn't

stop saying it. We laughed thinking about what it would be like if

he started saying " OK " at school. The teacher would tell him to

stop, and he would say, " OK " . Then, she would threaten to send him

to the principal and he would say, " OK " ...and on and on.

The brain just mystifies me.

I would like to know how is doing, but my husband is taking

this computer on a trip, and our home computer is out of order. I'm

thinking he is still having seizures, but just at night. But, I am

hoping that they have stopped completly.

Thanks for staying in touch.

Gretchen

> Hi Gretchen-

> It's early in the morning and I'm trying to catch up

> on the 150plus messages I've let pile up - at any rate

> - I've been thinking about Ethan as I haven't seen

> many postings from you - how is the big guy doing

> these days? How's he doing in school? What's up

> w/the tremor things? Did you ever take him in for

> that EEG? Any more pseudo seizures related to stress?

>

> Just checking in - I don't get on here as much as I

> used to so wanted to take advantage while I'm thinking

> of you.

>

> HUGS!

> (mom to )

>

>

>

> __________________________________________________

>