Re: stella update/

August 6, 2004

,

Hello! I am only repeating what our neuro has run. They do a

basic " renal screen " with Langan's blood, which includes a bicarb

check. Sounds like it's not the same as what has done? I

know the ranges are the same- I think 24-27 is normal, or close to

that. Langan has been as high as 20 and as low as 8. When she was

low was when all hell broke loose. Even at 12 we had real

problems. Now she is bearing weight like a champ, bench sitting,

etc. She even seems to be using her vision more and is more

interactive, although the docs have no explanation for that. I

think she is just finally feeling good, probably for the first time

in her life. Here's hoping she keeps it up!

We did a trial run of trileptal last week- just gave her 1/2 a pill

(75 mg total) at night. All hell broke loose with nighttime

seizures so the neuro has pulled it to see if things calm down. I

am not looking forward to the return of the meds.... = (

Hope all is well with !

> > >

> > > sorry guys, this is going to be a long one, i need to gripe.

> > >

> > > Yesterday was a tough day for Stella had to work so hubby was

with

> > her, she refused to eat, which she has been doing for quite some

time

> > now, but when she did eat she would throw it up. Her seizures

were

> > still continuing, and she was unresponsive for most of the day,

her

> > sister was the only one who could manage to get any food in

her. She

> > would eat one or two bites then up it would come. So, when I got

> > home I called the dietician and we agreed that maybe w/ the MCTon

> > board she might be too ketotic, since I don't have my blood

keytone

> > machine yet, i was unable to check, so she suggested i give her

some

> > OJ, then lower her ratio to a 3.75-1 still using the 8g of mct

per

> > meal. she did eat dinner, and continued to gag, but nothing

came up

> > thank goodness.

> > > I am so frustrated with our team here in seattle, the

dietician is

> > supportative though has no more suggestions, she is just too

> > inexperienced. The Nurse practicioner whom we contact to get

info

> > from has not responded to my calls, he was supposed to set up

her VNS

> > apt, and no response. I did email her epi last night, so i am

> > eagerly awaiting a response from someone soon.

> > > So a couple questions. Now that the diazepam is gone, how

long did

> > it take those of you out there to notice a change with the

diet. I

> > am scared her body needs the benzo to help control the seizures,

but

> > then looking back they didnt' do anything at all. I did ask her

epi

> > to give me a schedule to wean her off all meds, and just try the

diet

> > by itself. We are pros now with the diastat, so if need be we

can

> > give her that. What to do.

> > > I know most of you have noticed improvement in a short period

of

> > time, but is 3 months too soon to tell?

> > > There is definitly something neurologicaly going on though

because

> > her hands are curling and always lifted up rather than by her

side.

> > Her drops yesterday were face forward rather than backwards, so

yet

> > again her seizures have shifted. AAAHHH-- Well i 'd best get

some

> > work done, i'm on location shooting today for Microsoft, so i'm

using

> > their computer.

> > > Stansfield

> > >

August 6, 2004

langansmom wrote:

> ,

>

> Hello! I am only repeating what our neuro has run. They do a

> basic " renal screen " with Langan's blood, which includes a bicarb

> check. Sounds like it's not the same as what has done? I

> know the ranges are the same- I think 24-27 is normal, or close to

> that. Langan has been as high as 20 and as low as 8.

Yep, our ranges are the same and we're talking about the same thing. But

its just bloodwork right? Renal makes me think of.......you know, renal

> When she was

> low was when all hell broke loose. Even at 12 we had real

> problems. Now she is bearing weight like a champ, bench sitting,

> etc. She even seems to be using her vision more and is more

> interactive, although the docs have no explanation for that. I

> think she is just finally feeling good, probably for the first time

> in her life. Here's hoping she keeps it up!

Aw, thats so wonderful! Give your munchkin a hug from us okay

You guys must be thrilled, and you all sure deserve it. Enjoy the good

times while you have them, I think the challenge sometimes (at least for

me) is not always niggling in the back of my mind what might be

next......you gotta take what you got and run with it! And what a run

you guys will have!

>

> We did a trial run of trileptal last week- just gave her 1/2 a pill

> (75 mg total) at night. All hell broke loose with nighttime

> seizures so the neuro has pulled it to see if things calm down. I

> am not looking forward to the return of the meds.... = (

Wow, strong results! Now, see you be doing what I was just talking

about..........don't worry about the meds yet (I'm doing my best not to

over here too!), enjoy your husband and your little girl. Have fun with

her....if and when the time comes, you will have lots of time to worry.

Trust me, and I preach this better than I do it, but live in the moment!

> Hope all is well with !

So far so good thanks

Girls just got home from a 4 day camp tonight, they had a ball. The

director use to be one of their after school " teachers " , I was so

impressed with her.....I have always thought she was great but I took

the camp menu and modified for Jess (although officially off the diet I

am still really limiting starches (and sugars) of course and did up a

sheet on each girl setting out thier medications and where they would

need help, emailed this to her. Took out hard copies of the same, didn't

need them, every person from the kitchen the cabin counsellors and the

life guard (who does the meds) had the sheets they needed already and

knew what was on them.....my kind of camp

So now I will try to take my own advice and live in the moment......and

for the moment, the moment is good, very good

August 6, 2004