Re: Rhonda's previous advice/

[Guest guest]

Dear Rhonda,

Your letter was very informative and encouraging to me even though

you did not send it to me! I am very interested in what you are

feeding Shan. Every thing seems to have preservatives and artificial

sweetners! My son, , has been on the ketogenic diet since

1/27/04. For the first 3-4 weeks he did wonderfully. We were so

excited! Then he just seemed to have more and more seizures every

day, no matter what we did. He gets all the typical keto meals - hot

dogs, sausage, bacon, whipping cream, some saccarin (spelling?) and

lots of butter and mayonnaise. Could you give me some suggestions to

try? Also, did Shan have any other signs that she might have

problems with dairy, preservatives, and artificial sweetners? Did

she have rashes or anything else? does not have any other

symptoms, other than lots of myoclonic seizures. Thank you!

Ann

> Dear ,

>

> Over the past 2 years since starting the diet I have always been

encouraged

> and took comfort from the idea that there is always something to

fine tune

> on the diet when things are not going well. When we depended on

meds we had

> to hope the doctor was right and that the doctor's adding of a new

med or

> increasing the present med would be the answer. For the past 2

years the

> diet has empowered me to help my daughter. I no longer run to the

doctor

> but instead when things are " rocky " I brain storm and look for the

> solution...often researching the archives of this group or posting

my

> questions and getting possible solutions. I let the doctor know

what I've

> been doing at the next appointment which is often not for another 3

or more

> months.

>

> There seems to be an endless list of possibilities to consider when

fine

> tuning. Whenever the seizures increase or come back I look at what

I was

> doing prior and what I may have changed. It's been a little rocky

for us

> this week. We recently dropped the remaining dairies in her diet

> (cheese/butter) and changed oils from olive to sunflower resulting

in the

> ketones suddenly decreasing. Today I went back to olive oil with

minimal

> sunflower and I'm hoping that will be the answer. One important

thing that

> has helped in fine tuning is that we have eliminated all dyes,

> preservatives, artificial sweetners, processed foods from her

diet. The

> less possible triggers helped us discover that Shan is lactose

intolerant

> which in itself was causing seizures. Recently I have concluded

that a

> possible food trigger can slowly build up over weeks and months

until it

> causes problems (example: preservatives, colors/dyes, etc.).

>

> It has been a very long time since Shan has not wanted to eat. I

look at

> the ketones. Often when the ketones are excessively high a child

will not

> be hungry. When the ratio comes down he/she feels better and

eats. Another

> time when Shan would not eat was when her stomach hurt due to poorly

> digesting the fats and other food. After I started digestive

enzymes she

> felt better and ate fine. Other than those few times she has

always wanted

> to eat. She can tell time and she has been known to watch the

clock until

> when it is time for her next snack or meal.

>

> Please keep me posted on how you are doing. Here's hoping that

has a

> better day!

>

> Rhonda

>

> RE: which med to drop first? Rhonda's previous

advice

>

> Dear Rhonda

>

> You were such a help to me before, when my daughter had another

issue, if

> you recall. When I read this post, I was encouraged that with a

planner I

> can begin working on what you referred to here: calories and ratio.

>

> has had two horrendous days, seizuring like pre-diet days, or

worse.

> No meds on board.

>

> Keep you posted. What to do when they won't eat???? mum to

dear

> .

[Guest guest]

Dear ,

When you get yourself set up with a program you will have heaps of freedom.

They say that skinny kids do better on the diet, producing better ketones

etc. Shan was skinny when she started the diet. Presently she is about the

same as Shan, that is being 5 percent height and 10-15 percent weight. As

long as she is not gaining weight quicker than growing and producing

excellent ketones I am not concerned. If 's weight continue to increase

ahead of her height then you will need to reduce the calories, but otherwise

I would keep her where she is at and focus on " purifying " (eliminating

possible triggers) the diet. If you do decrease the calories then watch

closely for an increase in ketones. That's wonderful that responded to

the apple juice. I too have had many times where I have been thankful for

wisdom that God has given me during those desperate times. I too would have

decreased the ratio. I hope today goes even better. Another thing to

consider is that not eating can raise the ketones. Hopefully 's

appetite will become normal and you can get a good idea of how the lowered

ratio will affect her. If the ketones continue to be too high you can

always reduce the ratio again.

By the way, we have a 7-year-old son who is Vietnamese.

Rhonda

I am eliminating some things at your suggestion... Yesterday was worse than

pre-diet days, and finally late last night I realized that although I kept

telling the dietitian ketones were always high and not building during the

day, she did not seem to think this was a problem. I do. I gave a

teaspoon of apple juice and the seizures began to diminish over the rest of

the night. Perhaps two teaspoons would have done it faster, but I think her

body had gone acid. I am learning, too, and gleaning. The journey has just

begun. I remember someone sharing the apple juice idea, and I believe the

Lord reminded me of it in what was a scarey situation.

's ketones are mid to high today, she is dehydrated after seizuring so

much and not intaking fluids or food, but she is drinking now.

The dietitian did suggest lowering her ratio. Since she hasn't been eating

much for a day, I began today. Rather abruptly, but seems okay.

A friend has Excel and has worked some meals at this ratio for me. I am

still concerned calorie count to be high. is a little girl. She is

Vietnamese, and small in stature. She is 5 percentile on ht. for her age,

but 15 percentile for weight.

And, she was not hungry before this. Not at all. And dear loves to

eat. She was a malnourished baby when I got her, and food is important to

her.

Thanks, Rhonda. I hope this is the right move... calories may be next. I

need a program of my own so I can fool around with the diet and tweek it.

Basically, I have concluded that " they " get you started, then its your ball

game.

Hugs to you. mumma to dear , age five, and doing better today

[Guest guest]

Dear ,

Three cheers for having a better day and feeling better! joined

our family at age 4 months. Shan is from China and she joined our family at

17 months.

Rhonda

Dear Rhonda

So far, so good!!! I am just so blessed that she survived the mess. And,

amazingly, she has bounced back better than she ever has before the keto

diet.

The new ratio seems to work, and I am seeing ketones building as the day

goes on, and they were high just before bedtime. Wow.

My friend with the Excel program and the Stanford program plugged in is

doing menus for me right now, and I am excited to get my own computer and

program, maybe this week.

What a nightmare, and it is so good to be on track again. Many thanks for

your wisdom. I hope in the future to be able to help others.

Amazing, you have a little guy from VN! When did you get him? I have a

daughter from China, and three adult children from Korea. I am outnumbered

by beautiful asian children.

Blessings to you and yours........ ... mum to dear who is doing

a world of better today.

[Guest guest]

Dear ,

Three cheers for having a better day and feeling better! joined

our family at age 4 months. Shan is from China and she joined our family at

17 months.

Rhonda

Dear Rhonda

So far, so good!!! I am just so blessed that she survived the mess. And,

amazingly, she has bounced back better than she ever has before the keto

diet.

The new ratio seems to work, and I am seeing ketones building as the day

goes on, and they were high just before bedtime. Wow.

My friend with the Excel program and the Stanford program plugged in is

doing menus for me right now, and I am excited to get my own computer and

program, maybe this week.

What a nightmare, and it is so good to be on track again. Many thanks for

your wisdom. I hope in the future to be able to help others.

Amazing, you have a little guy from VN! When did you get him? I have a

daughter from China, and three adult children from Korea. I am outnumbered

by beautiful asian children.

Blessings to you and yours........ ... mum to dear who is doing

a world of better today.

[Guest guest]

Dear ,

Three cheers for having a better day and feeling better! joined

our family at age 4 months. Shan is from China and she joined our family at

17 months.

Rhonda

Dear Rhonda

So far, so good!!! I am just so blessed that she survived the mess. And,

amazingly, she has bounced back better than she ever has before the keto

diet.

The new ratio seems to work, and I am seeing ketones building as the day

goes on, and they were high just before bedtime. Wow.

My friend with the Excel program and the Stanford program plugged in is

doing menus for me right now, and I am excited to get my own computer and

program, maybe this week.

What a nightmare, and it is so good to be on track again. Many thanks for

your wisdom. I hope in the future to be able to help others.

Amazing, you have a little guy from VN! When did you get him? I have a

daughter from China, and three adult children from Korea. I am outnumbered

by beautiful asian children.

Blessings to you and yours........ ... mum to dear who is doing

a world of better today.