back in ICU

December 5, 2004

Okay stella was back again in ICU due to another status seizure, we

went in Wed for our routine visit with the neuro surgeon to check the

vns, that am she had been seizing constantly with grand mals and

myoclonics and something similiar to absense. They dedicided to send

us to the ER to admit her. After ativan, phenobarb and dilantin they

stopped the seizure, they had time to hook her up to an emergency eeg

to see the status, she was just unresponsive, but not an absence, they

call it a staring spell which is generalized on the eeg. I was so

frustrated because this was happening non stop the week prior when we

first ended up in ICU, they just didn't take the severity of her

situation serious enough. Her epi was the attending this week so he

saw it all and immediately saw she was in status. To make a long story

really short, she was in for 4 days, sent home with an addition of

phenobarbital while the klonopin is weaned over a month, then another

couple weeks to wean the phenobarbital. My daughter is a drunken

emotional mess. She cannot control her emotions, her wild body

movements.

The vns was turned on in ICU, it has been upped once, her voice sounds

like it is purring now when it is active. she coughs when it first is

going off and rubs her throat, so I know it is causing her some

discomfort.

We have always done the diet 100% vegetarian but now I am going to try

to add some fish to her diet. Does anyone use fish at all? And since

i've never cooked with it before, how do you cook it etc and which fish

do you use, which is better etc. Any info I'd really appreciate.

Especially menu ideas.

I'm not throwing in the towel on the diet yet, since her last BHB was

the highest ever with the added flax, but if we don't see any positive

results after the klonopin and phenobarbital are weaned I just don't

know what to do. It's really scary that all we have is the hope of the

VNS left.

Well finally she is home and so drugged that she's not seizing, I guess

that's something, finally her brain is getting a rest. The docs told

me if she was like what they saw then she was probally in and out of

status for a week long. I really hate seizures!!!

amanda

December 6, 2004

,

I am not much help with the fish questions. Just wanted to let you

know I was thinking about you guys. I am so sorry that Stella is

having such a hard time. I hope things improve soon.

(((((HUGS)))))

, mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned

due to persistent metabolic acidosis (now thought to be pre-

existing), but keto kid at heart forever.

> Okay stella was back again in ICU due to another status seizure, we

> went in Wed for our routine visit with the neuro surgeon to check

the

> vns, that am she had been seizing constantly with grand mals and

> myoclonics and something similiar to absense. They dedicided to

send

> us to the ER to admit her. After ativan, phenobarb and dilantin

they

> stopped the seizure, they had time to hook her up to an emergency

eeg

> to see the status, she was just unresponsive, but not an absence,

they

> call it a staring spell which is generalized on the eeg. I was so

> frustrated because this was happening non stop the week prior when

we

> first ended up in ICU, they just didn't take the severity of her

> situation serious enough. Her epi was the attending this week so

he

> saw it all and immediately saw she was in status. To make a long

story

> really short, she was in for 4 days, sent home with an addition of

> phenobarbital while the klonopin is weaned over a month, then

another

> couple weeks to wean the phenobarbital. My daughter is a drunken

> emotional mess. She cannot control her emotions, her wild body

> movements.

> The vns was turned on in ICU, it has been upped once, her voice

sounds

> like it is purring now when it is active. she coughs when it first

is

> going off and rubs her throat, so I know it is causing her some

> discomfort.

> We have always done the diet 100% vegetarian but now I am going to

try

> to add some fish to her diet. Does anyone use fish at all? And

since

> i've never cooked with it before, how do you cook it etc and which

fish

> do you use, which is better etc. Any info I'd really appreciate.

> Especially menu ideas.

> I'm not throwing in the towel on the diet yet, since her last BHB

was

> the highest ever with the added flax, but if we don't see any

positive

> results after the klonopin and phenobarbital are weaned I just

don't

> know what to do. It's really scary that all we have is the hope of

the

> VNS left.

> Well finally she is home and so drugged that she's not seizing, I

guess

> that's something, finally her brain is getting a rest. The docs

told

> me if she was like what they saw then she was probally in and out

of

> status for a week long. I really hate seizures!!!

>

> amanda

December 9, 2004

-

The fish that are Lowest in mercury: Anchovies, Arctic char, crawfish,

Pacific flounder, herring, king crab, sanddabs, scallops, Pacific sole;

tilapia, wild Alaska and Pacific salmon; farmed catfish, clams, striped

bass, and sturgeon. (Children and pregnant or nursing women can safely

eat two to three times a week.)

http://www.organicconsumers.org/Toxic/safe-fish.cfm

..