Bad Day!

July 16, 2004

Emma,

I think you are doing all you can. Cutting the teeth or lowering of the

atmospheric pressure either one could be doing it.

I am just thankful we have the rectal diazapam for emergencys. It saves trips

to the hospitals. It is so hard though to deal with seeing our little ones have

these seizures. If we could have them ourselves instead we would trade them

places.

The sleep is just what he needs.

Hugs,

Hallie

Bad Day!

Hi Everyone,

Feeling really fed up today - has been doing brilliantly

since his ratio had been lowered and I was increasing MCT oil.

Ketones fine, seizure control even better than before and he was so

bright and happy, so obviously I shared the good news with people on

this site and the other groups I visit and what happens - he has a

couple last night - not the end of the world - but then has a really

bad one at breakfast this morning - hits his head on the table and I

end up having to give rectal valium - he just couldn't get to sleep -

everytime he tried to drop off he would jerk and twitch. Only a trace

of ketones this morning! SOMEBODY tell me WHY!!!! I have done nothing

different - he went to bed bright and happy, all the usual food etc

etc - but today he was definitely not having any of it and was out

for the count for most of it! Serves me right for saying how well he

was doing - I am going to keep quiet in future. I am slouthing

everything at the moment and I can't figure out why. The only thing

it could possibly be is that it is very muggy and thundery around

here and that never suits him or he is sickening for something. He is

also cutting big back teeth so that could be the problem as well.

Sorry guys, just needed to sound off! I HATE having to give him any

form of medication now - I always feel so guilty - but I had no

choice, he was desperate to sleep.

Take Care

Emma - frustrated mum to - keto-kid since July 2002.

July 16, 2004

Hi Emma!

Well I'd like to thank you for posting about your frustrations.

Your message resonated with me in more than one way. Firstly my

little guy too is having a bad day, having some myoclonic jerks and

possibly some atonic seizures too as he is falling repeatedly --

several times an hour. He too has been doing absolutely,

unbelievably (to me at least!) well since starting the diet just one

month ago (almost seizure free until today). I also don't know why

he's off today except that like you I am wondering about the severe

hot humid weather. Issac also has never done well in the heat.

I have to laugh too because I haven't posted since starting the diet

because Isaac's been doing so well and I almost didn't want to jinx

things, or have to go back and say; wait a minute maybe all is not

as it seemed. But since I've let the cat out of the bag our lives

have been nothing short of transformed. Isaac has been virtually

seizure free weaned off of clobazam and halfway off valproic acid.

We've used no valium or ativan and his body is recovering steadily.

He is walking (most of the time)again for the first time in eight

months and is experiencing all those other wonderful changes so many

of the others here have talked about. My gratitude is profound.

Having him do poorly today and become so whiney and clingy again and

more importantly to remember the despair of not being able to

relieve his suffering and see him hurt himself in his attempts to do

what he used to be able to do, was almost unbearable. It would be

very tough to return to that life. So Emma, I can relate and I

thank you again for sharing your frustration -- it helped me.

Kathleen, Issac's adoring mum -- keto kid since June 20/04

> Hi Everyone,

>

> Feeling really fed up today - has been doing brilliantly

> since his ratio had been lowered and I was increasing MCT oil.

> Ketones fine, seizure control even better than before and he was

so

> bright and happy, so obviously I shared the good news with people

on

> this site and the other groups I visit and what happens - he has a

> couple last night - not the end of the world - but then has a

really

> bad one at breakfast this morning - hits his head on the table and

I

> end up having to give rectal valium - he just couldn't get to

sleep -

> everytime he tried to drop off he would jerk and twitch. Only a

trace

> of ketones this morning! SOMEBODY tell me WHY!!!! I have done

nothing

> different - he went to bed bright and happy, all the usual food

etc

> etc - but today he was definitely not having any of it and was out

> for the count for most of it! Serves me right for saying how well

he

> was doing - I am going to keep quiet in future. I am slouthing

> everything at the moment and I can't figure out why. The only

thing

> it could possibly be is that it is very muggy and thundery around

> here and that never suits him or he is sickening for something. He

is

> also cutting big back teeth so that could be the problem as well.

>

> Sorry guys, just needed to sound off! I HATE having to give him

any

> form of medication now - I always feel so guilty - but I had no

> choice, he was desperate to sleep.

>

> Take Care

> Emma - frustrated mum to - keto-kid since July 2002.

July 16, 2004