Re: /diet start

[Guest guest]

,

Sorry it's starting out a little rough. I'm glad you didn't have to do the

fasting though. Some it gets faster sz control I'm sure, but not us! We've

been struggling all along though it's still better and more effective than

all the meds we've tried. We saw an initial drop in sz, then an increase

back to where they were before. As we fine-tuned they dropped down again.

Not sz free (yet), but a bad day now is what we considered a good day

pre-diet. Hang in there. We kept reading that the first month is the hardest

and it was true! It's hard not to get discouraged I know, but it'll get

better.

ashley

's mom

----------

From: Trrrrracy@...

To: ketogenic

Subject: Re: GINA diet at home

Date: Wed, Aug 7, 2002, 7:38 AM

>Thanks . I'm glad we didn't have to go through the whole hospital

thing. I don't understand why they do that to kids really. Maybe you gain

seizure control faster that way. We are actually seeing more seizures now

but I was told that would happen. It's hard to stay focused when her life

seemed easier before the diet but I know the wait could be worth the

struggle

and she will be better as a result. We'll see...

Karley's mom

[Guest guest]

It sure is hard not to get discouraged. Karley wasn't having that many

seizures before the diet. Our goal is to maintain control and maybe even get

100% control and drop the meds to see if it helps her learning delay and just

makes her life better. At this point I feel like we've made her life worse.

Hard to stay focused. I am trying so hard to keep her out of the kitchen and

preoccupied and it's tiring. She doesn't understand any of this. She is a

trooper though. Her supplements are horse pills and I have to break them up

into swallowable pieces and she just swallows them all. I have to figure out

a better way before school starts though. I don't want to ruin what little

bit of food she has with crushed pills. This is one of my biggest dilemmas

at the moment. Any ideas? She's taking centrum and caltrate plus w/

magnesium. They are huge. The caltrate she has to take 3 times a day. All

of that swallowing, plus her regular meds is just way too much. It

certainly keeps her up on fluids though. Poor girl!! if you or anyone else

has any good suggestions I'd appreciate it.

mom to keto kid Karley, 8

[Guest guest]

Good to hear from you DeEtte. The supplements have been a source of debate

with the dietician. I keep hearing conflicting things from her and the list

and I didn't know which ones to use. Being new to everything I didn't want

to venture out on my own too much without her support right away. She was

very skeptical of kirkmans which I have mentioned on the list and I'm sure

put a few people on my bad side here. She was concerned that they didn't

offer a complete source and that other things would have to be added. She

wouldn't really help me figure that out and I don't know enough to figure out

on my own what combinations would give her complete supplementation. I just

finally went with her advice as a starting point. I will look into different

ones when I feel comfortable. I'll probably be asking questions when I get

to that point in a couple weeks.

The only new foods that Karley is eating is the real butter and the cream and

the oil. Everything else she's eating on the diet are things she had eaten

before. We dropped her depakote about a month ago. Her level went from 100

to 56 and she didn't experience any seizures as a result of the drop. We

didn't touch her lamictal. I don't want to mess with her meds right now.

She's going to be in my brother's wedding in early October and I don't want

her to be going thru withdrawl seizures at that time so I think we will hold

off on weaning until after that. She doesn't seize during the day right now.

I'm just playing it by ear. She also has a low thyroid level (T3) and a

very high Thyroid stimulating hormone (TSH) level that we are trying to

figure out with the endocrinologist. She's started a new med for that about

2 weeks ago. We are taking the good advice not to introduce more than one

new thing at a time. The thyroid hormone increased her appetite and activity

level. She was groggy prior to that because she was hypothyroid. Great but

it's not made the appetite thing any easier to deal with. It did slow down

somewhat before we started the diet. Poor girl. She has too much going on.

She's in good spirits most of the time though. She's not crying much and I

can usually get her mind off food by just staying active.

If you have a specific plan for supplements that you could offer me I would

be glad to know. I have gotten bits and pieces of so much information but

lack the knowledge of how to best put it all together for her. I was getting

really frustrated.

How is the baby? Are you all adjusting? Hope it's going well.

[Guest guest]

-- Sorry to hear that you're having a rough time. Is there

anything that's truly new that she's having on the diet? Wondering

if that could be a culprit. Did you drop meds? Could be withdrawl.

I'm just now getting back into the swing of reading posts, so I've

probably missed a lot. Also, if she's still on meds, remember that

the diet and the meds interact, so it's tough to get a full picture

until you're off meds -- actually quite a ways past in case you have

to deal with withdrawl seizures. I know it's tough. But, for us,

there's no comparison, either with seizure control or with overall

quality of life compared to how bad things were on meds, on meds and

the diet and withdrawing from meds while on the diet.

Our seizures were slightly worse in the beginning, too and that was

so hard. It took awhile -- but I almost feel that we're seizure-free

(only very occassional wake-up seizures at this point. . . I've

started some new things and will post more once I feel more confident

that the changes we've made have really helped).

Anyway, I know you really researched the supplements before you

started. I have to say that I'm a little surprised by what you ended

up going with. The multis I've used have been no problem -- the

Biotics Research was very crumbly and easily crushed into mayonnaise

and the Kirkmans I'm using now is a very tiny capsule that's very

easily hid in applesauce and mayo. Also, the Cal/Mag/Zinc II is a

liquid, so it's easy to hide in cream and only needs to be given once

a day. I agree -- you don't want to ruin her food as a carrier for

supplements. I think I'd look into going with something else -- and

hopefully getting a little higher quality supplement. Centrum is

really a pretty poor multi and I think the Caltrate probably isn't

much better.

Take care. . .I hope things get better. The first few days/weeks,

etc. are very difficult.--D

[Guest guest]

-- a lot of people on the list use the cal/mag/zinc II or III which is

a liquid and easily mixes into a cream shake. I usually bfreeze a few

rasberries, smush them into the cream, add HerbaSweet ( a good new sweetener

I've discovered), put in some flax oil and whatever other vitamins I need to

crush, and give it to Leo in the AM. No need for her to take horse pills.

Leo takes the Cal/Mag/Zinc from Whole Life and two NuThera capsules a day

from Kirkman (they're tiny) which pretty much covers his basic vitamins. I

also add vitaminc C to his Stevita drinks. I've also buried a lot of stuff

in whipped cream sweetened with Stevia and Vanilla extract. It is

discouraging. It takes a while to really figure out what they like and how

to proportion the meals. It takes some tinkering. But the hunger does go

away. My son can now eat whole chunks of butter with his lettuce. I could

never get him to get near mayonnaise, but now i give him an iceberg lettuce

and tomato salad with almost every meal, drenched in olive oil and a little

lemon juice. Whatever oil (olive, safflower) is left over from his meal,

gets soaked by by the lettuce.

There are ways to make the diet a lot easier (I'm still learning what they

are!). Peanut butter cookie and chocolate custard snacks have helped a lot

too (finally perfected the chocolate custard). Before Leo could swallow

pills (which he also just learned), I used to put it in whipped cream. Hang

in there. They're better at this than we ever expect them to be. I think

its really hardest on us!

Jane

Re: /diet start

It sure is hard not to get discouraged. Karley wasn't having that many

seizures before the diet. Our goal is to maintain control and maybe even

get

100% control and drop the meds to see if it helps her learning delay and

just

makes her life better. At this point I feel like we've made her life

worse.

Hard to stay focused. I am trying so hard to keep her out of the kitchen

and

preoccupied and it's tiring. She doesn't understand any of this. She is

a

trooper though. Her supplements are horse pills and I have to break them

up

into swallowable pieces and she just swallows them all. I have to figure

out

a better way before school starts though. I don't want to ruin what

little

bit of food she has with crushed pills. This is one of my biggest

dilemmas

at the moment. Any ideas? She's taking centrum and caltrate plus w/

magnesium. They are huge. The caltrate she has to take 3 times a day.

All

of that swallowing, plus her regular meds is just way too much. It

certainly keeps her up on fluids though. Poor girl!! if you or anyone

else

has any good suggestions I'd appreciate it.

mom to keto kid Karley, 8

[Guest guest]

-- I know, supplements seem to be a big debate. The trend I've

seen is that dieticians/neuros tend to think that " a vitamin is a

vitamin " so they recommend stuff like Centrum and Bugs Bunny. That

may be fine for a healthy person's everyday consumption (although not

the Bugs Bunny with nutra sweet) but we're talking about kids who are

on a diet that is not nutritionally complete and who also tend to

have more sensitivities to the fillers, colorings, etc. that are in

these vitamins. The other thing is that you need to remember that a

dietician is not the same thing as a nutritionist. A dietician knows

how to work the numbers, but essentially a gram of carb is a gram of

carb, etc. A nutritionist knows how to make these same numbers work

out to be as healthy as possible. The naturopath I'm working with,

who I trust very much, reviewed the Kirkman's and the Biotics and

felt they were both good -- probably leaning more toward the

Biotics. At any rate, just know that there are alternatives that

will give you the same or better nutrition, without the crushing

problems you're having.

What type of oil are you using? Oils give problems and so,

although I wish I could use them because I believe I could make her

fat sources a lot healthier, I've steered pretty clear of them. My

dietician originally calculated some meals with huge amounts of flax

and olive oil and I learned the hard way that both caused increased

seizures. I've also heard people mention salted vs. unsalted butter -

- saying that the unsalted was better. Who knows. . .

I'll right more later. . .crying baby to get to. . .--D

[Guest guest]

Jane -- Could I get the chocolate custard recipe? May have missed

it. . .--D

Peanut butter cookie and chocolate custard snacks have helped a lot

> too (finally perfected the chocolate custard).

[Guest guest]

,

We were discouraged in the beginning as well. It's just so hard for everyone

to get used to. We'll be at the 3 month point next week and it already seems

like old hat. Plus, on 1/4 of the meds and sz are less. It'll turn around

for you as well.

As far as supplements...We have the pill problem as well. cannot

swallow them. We're using Calcium Carbonate as our calcium supplement which

is probably not the best. But it is liquid and mixes well into the cream. We

add a little Milk of Magnesia to 's cream at night to help with

constipation. We crush everything else. I taste it and if there is no taste

(or aftertaste) I mix it in with his food. I don't have the greatest

suggestions because it's a problem for us as well.

Don't get too horribly wound up the first couple weeks or so. It's not going

to harm Karley if she doesn't get calcium or vitamin supplements for a week

or two. It's hard enough to get the diet going without worrying about a

million other things.

ashley

----------

From: Trrrrracy@...

To: ketogenic

Subject: Re: /diet start

Date: Thu, Aug 8, 2002, 7:08 AM

>>>It sure is hard not to get discouraged. Karley wasn't having that many

seizures before the diet. Our goal is to maintain control and maybe even

get

100% control and drop the meds to see if it helps her learning delay and

just

makes her life better. At this point I feel like we've made her life worse.

Hard to stay focused. I am trying so hard to keep her out of the kitchen

and

preoccupied and it's tiring. She doesn't understand any of this. She is a

trooper though. Her supplements are horse pills and I have to break them up

into swallowable pieces and she just swallows them all. I have to figure

out

a better way before school starts though. I don't want to ruin what little

bit of food she has with crushed pills. This is one of my biggest dilemmas

at the moment. Any ideas? She's taking centrum and caltrate plus w/

magnesium. They are huge. The caltrate she has to take 3 times a day.

All

of that swallowing, plus her regular meds is just way too much. It

certainly keeps her up on fluids though. Poor girl!! if you or anyone else

has any good suggestions I'd appreciate it.

mom to keto kid Karley, 8