Re: update on stella/

[Guest guest]

Hi -

Your story brought tears to my eyes! Are Stella's

seizures WORST since starting the diet or have you

noticed drastic changes in behavior/development? My

son, who was put on the diet at 1.5yrs. old was right

on track for development - we hadn't noticed any

delays - however, after only one wk. on the diet he

went down hill QUICKLY. He was on Lamictal at the

time and I believe the drug/diet combo. was too much

for his little system. He was always ultra sensitive

to medication - and I believe that since the diet

acts like a " drug " - 2 drugs proved toxic. The Dr.s

all thought it was a medication issue - that he needed

MORE Lamictal and/or it was his body getting used to

the diet. But - he lost coordination and was falling

all over the place. He cried and was miserable most of

the time. New seizure types were introduced and

increased in frequency. My little boy changed before

my eyes after starting this diet which was devastating

b/c I thought the diet was our last hope. Despite

this, I was determined to stick w/the diet but to lose

the drugs. I just didn't have the support from my

Dr.s who kept insisting on increasing the meds.

At the time of diet initiation, I was NOT a part of

this group - I didn't find this amazing group of

people until 6 months later. When I read first hand

stories about children who were toxic and eventually

did much better on the diet without medication, I

INSISTED we start to wean. My Dr.s cautiously agreed

- but were not supportive. With each decrease, we

saw fewer seizures. The wean was tough but I was

determined to get thru it b/c I was noticing a huge

difference. is definitely a different kid

w/out the meds on board. We are so close to being

seizure free and it is much easier to tweek the diet

w/out meds interfering.

Please consider weaning the medication before you give

the diet up. It might be your answer.

You are right, our children are beautiful and none of

them deserve to be plagued w/these horrific seizures.

It breaks my heart that my son can't enjoy the

simplicities of life that are taken by granted by so

many of us!

My thoughts and prayers are with you and sweet Stella.

(mom to - nearly 3yrs. old - ketokid

since 6/03 - med free since 3/27/04 - working on the

seizure free part.)

--- stansfield/lyonsfamily astansfield@...>

wrote:

> 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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