Re: Want to fine tune, but dietician won't budge... Advice needed

[Guest guest]

Surely lack of seizure control is the VERY reason for changing things!

We have changed 's ratio a lot. In the beginning by the dietician,

but then I changed a bit myself. I felt her protein was too low so I upped

it. I also thought her calories were too low so I upped them too. She

began on a 4:1 ratio but that made her too ketotic. Now she is on a 3:1

ratio and doing ok, but not sz free. I use the meal planner to make little

changes in ratio, calories etc. I want to try to reduce meds because I have

heard many say that often need to be reduced to become sz free. However we

can't get in to see the neuro till March. Grrr. (51/2 months after starting

the diet!)

Good luck,

Jill

At 06:16 AM 11/14/01, you wrote:

>As I've already posted, Paige is IMO getting too many calories, too

>little carbs, and she weights too much.

>

>The dietician won't budge on anything " Cause they haven't seen any

>seizure control " (if you can believe that!)

>

>SO.... here is where I need your advice... Should I start fine tuning

>without their approval, and is there any reprocussions I can face if

>I do???

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

> resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

YES....

From the sounds of it, if she is the one that set your ratio, calories and carb allotment, etc your dietician is not very well informed about this diet. Thing is, that could totally sabotage you from EVER getting seizure control. Are there any other neuros you could chose from in your area? If I were you, I would consider making some changes..... go very slow, give it time, don't do too many things different all at once..... and I wouldn't even tell the dietician. Then, if you see some positives come out of it, you can tell her at that point. Why is it that they want her to stay at that weight? I thought it was common knowledge that the kids get better seizure control when they're on the thin side.

Patti, mom to Katera, age 5, Keto Kid since 10-10-2000.....med-free, seizure-free.

Want to fine tune, but dietician won't budge... Advice needed

As I've already posted, Paige is IMO getting too many calories, too little carbs, and she weights too much.The dietician won't budge on anything "Cause they haven't seen any seizure control" (if you can believe that!)SO.... here is where I need your advice... Should I start fine tuning without their approval, and is there any reprocussions I can face if I do???

[Guest guest]

If I were you . . . I would take matters into my own

hands. . .slowly. . . one small change at a time, so

you can get a clear picture of what's going on. The

only repurcussions would be seizures -- which you

already have, right?

I think I'd first adjust her calories (which I can't

give you a good read on -- perhaps someone here can,

though), then reduce her protein slowly, which will up

her carbs. How is she feeling -- in addition to

having seizures? You really do need some carbs to

" feel well " -- in addition to the vitamins if you

reserve them for fruits and vegies (which I do).

Keep asking questions. . . I think this list can help

a lot!--D

--- Hirchert4@... wrote:

> As I've already posted, Paige is IMO getting too

> many calories, too

> little carbs, and she weights too much.

>

> The dietician won't budge on anything " Cause they

> haven't seen any

> seizure control " (if you can believe that!)

>

> SO.... here is where I need your advice... Should I

> start fine tuning

> without their approval, and is there any

> reprocussions I can face if

> I do???

>

>

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. " -- Mother Theresa

__________________________________________________

[Guest guest]

I know what I did. I sat down and read my book I highlighted

all the important info. I made my own menus and asked this group

for advice. My dietitian wasn't following the book and the book is

proven. She is just a young nobody that went to school to take care

of diets in a hospital. She had us on 875 calories and our seizures

increased. He is now on 675 calories a day and is at the 20-25% on

height to weight ratio. We have the delight of being seizure free

for the last 3+ days. If I had continued to listen to my dietitian,

we'd be off the diet, on too many drugs and I would still have a zombie

child. Nick is 21 months and has the skills of a 4 month old.

But, I see so many positive changes now. When I told the dietitian

what I was doing, she was upset, but I told her that if she didn't want

me to question her she shouldn't have had me read the book before I started

the diet. If you don't have the book , get it. The ketogenic

diet- A treatment for epilepsy.

By Freeman.

Good luck

Dianna

Hirchert4@... wrote:

As I've already posted, Paige is IMO getting

too many calories, too

little carbs, and she weights too much.

The dietician won't budge on anything "Cause they haven't seen any

seizure control" (if you can believe that!)

SO.... here is where I need your advice... Should I start fine tuning

without their approval, and is there any reprocussions I can face

if

I do???

"The Ketogenic Diet....a realistic treatment option, NOT

just a last resort!"

List is for parent to parent support only.

It is important to get medical advice from a professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

I'm just going to through my .02 in. It is easier for

the body to turn carbs into sugars and it will do this

if it feels a lack of energy storage. With protein

however it is more likely to get rid of the extra

rather than convert it.

Remember each child is different...my son for instance

is in the 75% for his age. He is on 1800 calories per

day and has been since he started the diet in July.

He has only gained 1 pound since and that was because

he hit a growth spurt last month.

I make changes whenever I feel they are necessary.

You know your child best and if you feel that she

needs to have lower calories then decrease them

gradually. You can always go back to the way it was.

Just make sure you keep a constant ratio to help

maintain ketosis.

Sometimes it is easier to beg forgiveness than to ask

permission.

Good luck,

Kalii

Mom to Logan 4 (ketokid since 07/01, seizure-free) and

big brother Cody 8.

--- Hirchert4@... wrote:

> As I've already posted, Paige is IMO getting too

> many calories, too

> little carbs, and she weights too much.

>

> The dietician won't budge on anything " Cause they

> haven't seen any

> seizure control " (if you can believe that!)

>

> SO.... here is where I need your advice... Should I

> start fine tuning

> without their approval, and is there any

> reprocussions I can face if

> I do???

>

>

__________________________________________________

[Guest guest]

I don't even ask our dietician anymore. Luckily, she is knowledgable and

supportive, but I find it easier just to do it on my own.

[Guest guest]

On Tue, 13 Nov 2001 22:16:42 -0000 Hirchert4@... writes:

As I've already posted, Paige is IMO getting too many calories, too little carbs, and she weights too much.The dietician won't budge on anything "Cause they haven't seen any seizure control" (if you can believe that!)SO.... here is where I need your advice... Should I start fine tuning without their approval, and is there any reprocussions I can face if I do???I also took matters into my own hands. First I ordered Freemans book

and learned how to calculate the diet myself. Then with the help of several

listmates I planed the direction I wanted to go. After plugging in s

mealplans into the mealplanner I found that exact values made a huge

difference. I simply informed my dietitian that I had the mealplanner and

the first few menus she checked...after that....Freedom!! from there I

upped his fats increasing his ratio, and lowered his cals...informing them

at first...and now they simply ask me what Im currently doing (its been

4 1/2 years) since then IVe taken him to several alternative docs and

done tons of supplementing and alternative things....not even bothering

to inform them. I look at it as a 'need to know' thing...some things

they dont need to know...LOL

I think they only thing we can really get into trouble for is weaning drugs.

(thats if it makes things worse...usually not) IVe always gotten the official

okey dokey...but done it at my own pace.

If youd like I can go over numbers with you and see whazzup... I need

age, weight, height, ratio, cals, and prot.

BTW...Im a big Zeppelin fan and wanted to name my 6 year old

daughter Paige (after Jimmy) but Hubby wouldnt let me...LOVE

the name!

cya

bArb....s mom

[Guest guest]

----- Original Message -----

> As I've already posted, Paige is IMO getting too many calories, too

> little carbs, and she weights too much.

>

> The dietician won't budge on anything " Cause they haven't seen any

> seizure control " (if you can believe that!)

>

> SO.... here is where I need your advice... Should I start fine tuning

> without their approval, and is there any reprocussions I can face if

> I do???

No seizure control is no reason to not play with the diet. Unless we play

with the numbers how will we fine tune it to suit our individual kids? Some

people are crazy in their thinking.

If I were you I'd be fine tuning myself. Using the members here you will

have lots of advice and support, and far more understanding than you'll get

from most doctors and dietitians.

Best wishes

(Hannah's mum, Australia)