Sevi update...(LONG)

[Guest guest]

HI all...

I am SOOOO sorry to have disappeared for so long! We were in Texas

and my mom's computer was not cooperating so I haven't read anything

in over three weeks. I'll try my best to get caught up (thank

goodness for archives!) and take care of anything I need to as far as

moderating goes. Also, while I was home, my mom, dad and brother

bought (two year lease with option to buy at end) a golf course! No,

we are not even close to wealthy and they know nothing about running a

golf course...just love playing, but it is a dream come true for them

and they are so excited. Please keep them in your thoughts and

prayers any time you think of golf....this is a very big thing for

them to do!

Now, on to Sevi...

Of course, when we went to Texas, he fell apart. He had a seizure at

2:00 in the morning in the middle of West Texas on the trip out and

had to be taken to the hospital and he just kept having diastat days

for the first week we were in Texas...many of you probably remember

that he does horribly in Texas for some reason. I finally broke down

and started the zonegran...I was truly desparate to get him doing well

in Texas since we will be moving there in November for a year. He

failed miserably...he cried for hours and hardly slept at all for the

entire week he was on it. He seizures got worse with old types we

haven't seen since starting the diet. Since we took him off, he's

been far happier. I'm at a point were I have to say I've all but

given up...as hard as it is to admit that! Nothing has given us

consistent control. I can't figure out this darn diet...he does well,

then crashes for no apparent reason and I have to fumble around

again.The best we've had was on lots of butter and cream with a low

ratio. Of course, he turned out to be allergic to milk and I've not

been able to duplicate the control with anything else. I even stooped

to plain old lard (did you know you can buy it in the store???)

thinking that it is a saturated fat and may work like the

butter/cream. It didn't at all and it was a mess...he plays with his

hands in his mouth as he eats, then rubs it in his hair...lard is

surprisingly hard to wash out of hair. I've honestly gone to just

giving him a low carb, adeqaute protein, high fat diet with weighing

or anything...just eyeballing it from my experiences over the past

year and a half. He's doing no worse, but no better either...a small

seizure or two a day...lasting about a minute each. He snaps out of

it and goes on with life like it never happened. I'm at a point right

now were that is acceptable. I just need a break! Is that

horrible????? I know I will not try another med for a long

time...that's 9 down with terrible results and MORE seizures. I know

VNS is the next thing to discuss, but I'm just not there yet

emotionally. It's been a very mind numbing month trying to figure all

of this out without all of you guys. Any thoughts???? We've tried

just about everything under the sun, but throw the suggestions at me

anyway...I'm sure I'll paddle my way out of this pity puddle soon and

be ready to tackle this monster again. Sorry this was so long...it's

so good to have my computer back and have all of you out there to talk

to. Nan If there's any thing that I need to deal with, please let me

know....I actually like having things to take care of, but it'll take

me a while to get through all the messages.