Re: A Proper Introduction > Fran

[Guest guest]

Welcome, Fran and Caroline. It's wonderful that you are going to

give the diet a try. You certainly have done your homework (as we

must) and worked hard to get things going. Bravo!!

The one thing that makes Caroline similar to all the kiddos here is

that the meds didn't work for her. Our daughter had horrible side

effect from the meds. and looking back, very little seizure control.

At the time we wondered how bad things would be without meds if they

were as bad as they were with them. Overall, I don't think it would

be much worse.

I am Cammie, Mom to , age 8. She started the diet 16 months ago

and has been seizure free since then. She, too, noticed the HUGE

difference that being off meds. made. She has been a trooper on the

diet. Don't let anyone tell you that an " older " child can't do it.

has had little " cheats " on occasion that haven't caused

problems. She didn't cheat at all for the first 6 months, though. I

knew that she would do well in the beginning if the diet worked. Now

that we are into the home stretch and weaning, it is harder, but

she's hanging in. Pasta is her favorite, too!!! (and now, she can

some--but not nearly as much as she wants)

Great quote from your dietician. I agree 100%. Having a good

dietician who is committed to making things work for you is so

important to your success. Our dietician is fantastic, too.

So, give Caroline a big hug and tell her to enjoy a wonderful

Christmas dinner before starting the diet that hopefully will take

her seizures away for good!!

Cammie

[Guest guest]

In a message dated 12/14/2004 10:15:05 PM Eastern Standard Time,

jms@... writes:

> Our daughter had horrible side

> effect from the meds. and looking back, very little seizure control.

> At the time we wondered how bad things would be without meds if they

> were as bad as they were with them. Overall, I don't think it would

> be much worse.

I absolutely agree, Cammie. Her quality of life on meds has decreased far

more on meds than before. Uncontrolled, the seizures were 3-4 weeks apart. I

know

there's a lot of international research that suggests that statistical

outcome is not different between countries that aggressively treat E and those

that

don't. The diet is a more calculated risk....AND solution, though. Thanks so

much for your support!

BTW, I thought I saw some low carb pasta in the supermarket recently. If you

tried that, do you think your daughter could enjoy a larger portion?? Wonder

what it tastes like?

--Fran

[Guest guest]

Fran,

(&&& below)

>The diet is a more calculated risk....AND solution, though. Thanks

so

> much for your support!

&&& Our thoughts about the diet were exactly that--it's more

calculated. We felt we had nothing to lose by trying it and

possibly, everything to gain. It was absolutely a risk worth

taking!! But, even if the diet hadn't worked for , I doubt we

would be sorry we tried. I'm sure the diet is " harder " and more

frustrating when seizures aren't controlled, but I think it is still

well worth the effort to keep fine tuning. In the end, if the diet

didn't work, we would know that we gave it our best. You're welcome

to the support!! There's a lot of experitse in the parents here --

you'll learn a lot more as you go along.

>

> BTW, I thought I saw some low carb pasta in the supermarket

recently. If you

> tried that, do you think your daughter could enjoy a larger

portion?? Wonder

> what it tastes like?

&&& LOL!! At our 6 month follow-up with our keto team we had a

long discussion with our dietician about the " low carb " products that

are available now. She suggested the pasta, too, but whispered to me

that in her opinion it tastes like rubber bands!! But, yes, we did

use it and liked it. I think it's " ok " --not great tasting, but

not as bad as rubber bands. I think part of the trick for was

that she didn't have any real pasta for long enough that maybe she

thought the low carb stuff is how pasta really should taste. Now

that she's had the real thing again, I don't know if she'd like it as

well. We used the Keto brand. I have noticed that some of the major

pasta compaines here (like Golden Grain) have a " lower carb " version

that has about half the carbs of the regular. Haven't tried that but

we might.

Cammie