Re: Re:Satnam

[Guest guest]

Satnam,

My name is - What type of seizures was/is kristan having? How long did

it take to get them down to 5-20 a day with the diet? Our baby 17months has

around 100 seizures daily - probably more that I do not see while sleeping etc.

We are new to the diet and we weaned drugs before starting the diet as well. We

are still in the 50-80's for seizures daily now. Just wondering how long it

took for you guys, I realize every kido is different - sounds like our Zaki and

your Kristian may have same type of seizure?? Zaki has strictly myoclonic and

they cluster as well - so the numbers can really get up there some days. What

type of control would have been acceptable to you to continue the diet?

Re: update on stella

, I'm so sorry Stella is having such a rough time. Kristan

used to have 100's of seizures, infact, 150-200 a day, but that was

when she was on a lot of meds, she's not on meds anymore and we

started the keto diet about a week after all meds were stopped and

noticed a big drop to 5-6 a day when we started the diet. We have

fine tuned and done a lot with the diet and haven't gotten the

success/control we wanted so we are currently weaning Kristan off the

diet. She is no worse as we wean her off. Right now her seizures

are anywhere from 5-20 a day but she has been teething lately and I

think she might be coming down with something and has had 40 today

and has been vomiting with every seizure.

Good luck with the VNS, I hope it is the answer for your Stella. I

will pray for her.

Satnam, mom to Kristan, 23 months

Keto kid since August 2003 and currently weaning from the diet

> Hi all, it's been ages since I've posted, life has been so hard

lately.

> Stella started the keto diet this year May 10th. It's been awful

for

> her, I think her seizures could not get any worse. She had 2

wonderful

> weeks seperate of each other with no seizures, but the rest of the

time

> she's been seizing every day. And some days in status. She's due

for

> the vns on the 19th of this month, and i'm just wiped out, i've hit

> rock bottom with my emotions. Last night while giving stella her

bath,

> I just broke down, her little body which is tiny now she's on the

diet,

> is so beautiful and I can't imagine seeing those nasty scars on her

> neck and chest, I know it's a chance for her, and it's only chance,

but

> it just kills me that there is nothing else. Our kids who are so

> beautiful and loving and sweet, and just so innocent have to endure

> this nasty disability and for stella and those kids who are having

such

> a tough time out there it's just not fair. She had an emergency

eeg

> last friday and it proved she was in status, not TC status but some

sub

> clinical status where she would have periods of no response, her

head

> would droop, she drool, her hands would twich, eyes and eyebrows

> twitching, her legs or arms may jerk or her head would throw back

> little myoclonics I guess, then there would be the odd TC thrown in

> too. They put her on a huge dose of klonopin to try to stop the

status

> which it has done, but now she's a wreck, so emotional, can barely

hold

> her head up, is drooling all the time, cries when I walk out of the

> room, can barely talk. I swear it's gone from bad to worse. What

I

> wouldn't do to trade places with her and take it all away.

> So now i trying to figure out if I take her off the diet and let

her

> enjoy food again, or keep her on it with the vns. Her seizures for

> those of you who don't know anything about her can range from one

to

> over 100 in a day, with regular status events.

> Sorry about my emotional rambling,

> amanda

>

>

> Mom to Stella, age 51/2, started keto diet May 10th 2004. On

lamictal

> and diamox, just weaned diazepam (yippeee). Still waiting for

Stella

> to be seizure free, but she's doing much better. Failed every med

> available. Next is the VNS. Also, Anisa age 10, healthy, vibrant,

> beautiful and a wonderful big sis.

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