Re: Re: seizures verses scd diet,is it worth it?

[Guest guest]

Mindy........

<<If I had to crawl to the moon with a rock-filled backpack to get my

kid seizure free, then the price would be worth paying. To make

some meals to make my kids better seems so UNdifficult.>>

You just made me smile! I'm in absolute agreement with you...... After

having done the Ketogenic diet for over 2 years, SCD is a walk in the PARK! I

look back now and can't believe I survived that time. I only wish I could say

that Katera had continued to be seizure free on SCD. We've done everything

there is to do...... and still we keep plugging away. We just went to the ER in

an ambulance last Thursday. She is *better* on SCD than at any other time in

her life..... that's all I know. Still, I have said more than once that I would

just about give my right arm to be rid of seizures...... I'm thinking that long

crawl to the moon wouldn't be so bad. If you decide to go, I'll be right there

with you!

Patti

[Guest guest]

Gosh, this sounds like a rough road you have been on. What a testament to your

determination to help her, though!

I've heard about the ketogenic diet for seizure treatment... and you say SCD has

worked better? I find that fascinating - and I hope the progress you have made

continues to improve over time until she is indeed seizure free. Katera is

blessed to have you for a mom.

Robbie

Re: Re: seizures verses scd diet,is it worth it?

Mindy........

<<If I had to crawl to the moon with a rock-filled backpack to get my

kid seizure free, then the price would be worth paying. To make

some meals to make my kids better seems so UNdifficult.>>

You just made me smile! I'm in absolute agreement with you...... After

having done the Ketogenic diet for over 2 years, SCD is a walk in the PARK! I

look back now and can't believe I survived that time. I only wish I could say

that Katera had continued to be seizure free on SCD. We've done everything

there is to do...... and still we keep plugging away. We just went to the ER in

an ambulance last Thursday. She is *better* on SCD than at any other time in

her life..... that's all I know. Still, I have said more than once that I would

just about give my right arm to be rid of seizures...... I'm thinking that long

crawl to the moon wouldn't be so bad. If you decide to go, I'll be right there

with you!

Patti

[Guest guest]

The research we have done on seizures does not support the brain damage

theory commonly held. It seems more likely that the cause of the seizure

brings on brain damage, not the siezure itself. Also the situtation in which

seizures occur can be dangerous, ie at the pool, on a bike, etc.

But I can say that the diet changes have become habit and simple and that

our daughter is siezure free when strictly adhering to the diet.

Good Luck. E

Re: seizures verses scd diet,is it worth it?

> If I had to crawl to the moon with a rock-filled backpack to get my

> kid seizure free, then the price would be worth paying. To make

> some meals to make my kids better seems so UNdifficult. I don't

> know this particular child's situation, but i know in mine that the

> seizures were hard on her, sapped her energy, and were damaging her

> brain. This diet can be done in a simple way if planned well. I

> have the whole family on it to support her and make her feel less

> different but it doesn't have to be done that way. Other people

> here also mention how they simply prepare an extra large dinner at

> night of basically meat and veggies and reheat for lunch the next

> day. If they could just start out doing that stuff and not worry

> about doing nut flour baked goods, etc. then it would seem less

> HUGE. There are simple snacks to be had that have carbs. I'm sure

> lots of people are put off by the hugeness of the change, but it's

> not so overwhelming if you start off small. Personally, I still

> can't comprehend the concept of deciding seizures were easier to

> deal with than improving my kid's quality of life. I hope they make

> an effort to understand the gut-brain connection and act on it.

>

> Mindy in Oregon

>

>

>

>

> For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

>

[Guest guest]

<<I've heard about the ketogenic diet for seizure treatment... and you say SCD

has worked better? I find that fascinating - >>

Robbie,

Our first year on the ketogenic diet was very good. Only one seizure in that

entire year. Then, she just started not being able to tolerate being in deep

ketosis. Most of the kids don't have that problem. So, anyway, it all fell apart

for us in the second year..... we kept trying to tweak the diet to fit the

situation but finally I just couldn't do it anymore. It is just a VERY difficult

diet to do...... every single meal is planned on a computer program... every bit

of food they eat must be weighed to the exact specifications of the program and

they cannot eat ANYthing but what is in the plan. Transitioned to SCD in April

of 2003 (woo-HOO.... freedom!!!) and immediately went ten weeks seizure free,

had ONE seizure, then went FIVE MONTHS completely seizure free. There is no

denying there is something to this diet for seizure kids, even though I had

never noticed any sort of GI problems with her..... and never any food

sensitivities or allergies. We then had a rough winter/spring with viral

illnesses, ear infections, etc...... and seizures. Also, if I stray from SCD at

all (which I admit, I have a couple of times... very early this spring when we

were BOTH sick, and again this summer, after her surgery), we definitely see an

increase in seizure frequency.

Patti, mom to Katera