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IT'S NOT YOUR FAULT. WE ARE NOT DOCTORS. SOMETIMES WE NEED TO PUT OUR FAITH IN

THEM BECAUSE WE DON'T KNOW WHAT ELSE TO DO AT THAT MOMENT. I'VE LEARNED THROUGH

THIS EXPERIENCE THAT WE ARE PAYING CUSTOMERS AND WE HAVE EVERY RIGHT TO QUESTION

DOCTORS. I WILL NEVER MAKE A MISTAKE AGAIN AND SEEK ONLY THE BEST DOCTORS FOR MY

CARE AND MY FAMILY'S. I LEARNED THIS WITH MY SON AND NOW MYSELF. ALWAYS

QUESTION. I HOPE THINGS WORK OUT FOR THE BEST FOR YOU. DON'T GIVE UP HOPE AND

DON'T BLAME YOURSELF.

LISA B.

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IT'S NOT YOUR FAULT. WE ARE NOT DOCTORS. SOMETIMES WE NEED TO PUT OUR FAITH IN

THEM BECAUSE WE DON'T KNOW WHAT ELSE TO DO AT THAT MOMENT. I'VE LEARNED THROUGH

THIS EXPERIENCE THAT WE ARE PAYING CUSTOMERS AND WE HAVE EVERY RIGHT TO QUESTION

DOCTORS. I WILL NEVER MAKE A MISTAKE AGAIN AND SEEK ONLY THE BEST DOCTORS FOR MY

CARE AND MY FAMILY'S. I LEARNED THIS WITH MY SON AND NOW MYSELF. ALWAYS

QUESTION. I HOPE THINGS WORK OUT FOR THE BEST FOR YOU. DON'T GIVE UP HOPE AND

DON'T BLAME YOURSELF.

LISA B.

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IT'S NOT YOUR FAULT. WE ARE NOT DOCTORS. SOMETIMES WE NEED TO PUT OUR FAITH IN

THEM BECAUSE WE DON'T KNOW WHAT ELSE TO DO AT THAT MOMENT. I'VE LEARNED THROUGH

THIS EXPERIENCE THAT WE ARE PAYING CUSTOMERS AND WE HAVE EVERY RIGHT TO QUESTION

DOCTORS. I WILL NEVER MAKE A MISTAKE AGAIN AND SEEK ONLY THE BEST DOCTORS FOR MY

CARE AND MY FAMILY'S. I LEARNED THIS WITH MY SON AND NOW MYSELF. ALWAYS

QUESTION. I HOPE THINGS WORK OUT FOR THE BEST FOR YOU. DON'T GIVE UP HOPE AND

DON'T BLAME YOURSELF.

LISA B.

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For a long time I felt that way too, and nothing really helped except

the passing of time. We can't really be blamed for listening to our

doctors, since they're supposed to be the experts and naturally we

listened to the advice that we paid them to give us. But it's hard to

avoid feeling bad. Anyway you are definitely not alone, other women

in this group have also mentioned feeling this way.

>

> I feel an overwhelming sense of guilt and dread. Has anyone else

felt this way? How did you deal with it?

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For a long time I felt that way too, and nothing really helped except

the passing of time. We can't really be blamed for listening to our

doctors, since they're supposed to be the experts and naturally we

listened to the advice that we paid them to give us. But it's hard to

avoid feeling bad. Anyway you are definitely not alone, other women

in this group have also mentioned feeling this way.

>

> I feel an overwhelming sense of guilt and dread. Has anyone else

felt this way? How did you deal with it?

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Share on other sites

For a long time I felt that way too, and nothing really helped except

the passing of time. We can't really be blamed for listening to our

doctors, since they're supposed to be the experts and naturally we

listened to the advice that we paid them to give us. But it's hard to

avoid feeling bad. Anyway you are definitely not alone, other women

in this group have also mentioned feeling this way.

>

> I feel an overwhelming sense of guilt and dread. Has anyone else

felt this way? How did you deal with it?

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  • 1 year later...
Guest guest

My Claire will begin to vomit when the ketosis is too high so we lowered

the ratio slightly. Since the fat in the diet suppresses the appetite,

I started separating the fat from her food. I don't know if other

children will tolerate this but it works well for us. I give Claire her

food by itself first to make sure she eats. Then I give her whipping

cream to drink or the oil off a teaspoon like medicine. Also keep in

mind that using cream versus butter or oil will require your son to eat

more volume since cream has a lower fat gram per tablespoon than the

others. The risk in doing it this way is that your son won't take all

the fat after eating all the food and the ratio will be off. I use

Grapeseed oil because it has almost no taste to it compared to olive oil

or even canola oil.

Lois

Thank You

I want to thank you for the smoothie idea, I had our diatition figure

out the amounts for me today. Gavin did really well with it, he

drank about half. Yes, his ketones are way to high, the diatition

had me give him apple juice today to try to bring him out of such

deep ketosis. But it hasn't seemed to make a difference...how long

should it take? We just went to a 3:1 ratio today. His urine dip

sticks do turn deep dark purple as soon as I dip them. He also

started throwing up last night again, but stopped after I gave him

the apple juice. Has anyone seen these where high ketones cause

vomiting? We don't have a glucomoter here at home, but when he was

in the hospital his BG levels ranged mid fourties to mid seventies.

Except when he was on IV fluids then they were like 100-120. OK now

I have another question. Did anyones kids ever have high colestral

before starting the diet? Gavins was like 208...I freaked out, I

have always been very careful to give him good, healthy foods. His

doctor said it was probably genitic and I couldn't do anything about

it. Does anyone have any insite on this? Thanks again for all the

great advise.

" 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

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Guest guest

, sounds like he was way to ketotic, have your doc give you a

glucomete, i find it very handy, some parents on here also have a machine

which measures blood keytones, i just ordered mine and will start to use

that. We never had a problem w/ high cholestral but then again stella is a

vegetarian, so not too many fats were in her diet. Did he need to loose

weight before? I know some kids go very ketotic at first as they are

burning their own body fat, I have a friend whose son lost 30 lbs and was

way too ketotic, so he was put on a lower ratio for a while, but I think

they might go up since he lost the weight and still needs to gain seizure

control.

You should download the stanford meal planner and experiement w/ your own

meal plans, it is excel based and sure makes meals easier especially when

you have to wait for your dietician to plan them for you.

the link should be on the yahoo group under links, but i'll dig it up and

send it to you.

Hope things start turning around for you.

--

-mom to Stella, 5years old, started keto diet May 10th 2004 still

waiting to be seizure free. Also on Lamictal and Diamox. Just finished

weaning diazepam. Anisa is almost 10 and a happy healthy girl.

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Guest guest

Yup, the vomitting is no doubt related to the high ketones, Jess did

that. And the apple juice stopping it made pefect sense.

Cholesterol - he's not on tegretol by any chance is he?? That can cause

high cholesterol. Our neuro said mainly genetic too and not much that

people can do about it, after noting 's perfect cholesterol

levels for six years on the diet.

For the diet, try to limit cream, increase healthy oils like olive and

flax (flax is great for lowering cholesterol independant of the diet -

but go slow with it, can cause tummy troubles and incrases

ketones......oops maybe not such a good idea at the moment, but when you

find a good ratio for him you could give a small amount a try), avoid

processed meats.......Kathy was an expert on this one with , right

Kathy??

, 's mom

emily00212001 wrote:

> I want to thank you for the smoothie idea, I had our diatition figure

>

> out the amounts for me today. Gavin did really well with it, he

> drank about half. Yes, his ketones are way to high, the diatition

> had me give him apple juice today to try to bring him out of such

> deep ketosis. But it hasn't seemed to make a difference...how long

> should it take? We just went to a 3:1 ratio today. His urine dip

> sticks do turn deep dark purple as soon as I dip them. He also

> started throwing up last night again, but stopped after I gave him

> the apple juice. Has anyone seen these where high ketones cause

> vomiting? We don't have a glucomoter here at home, but when he was

> in the hospital his BG levels ranged mid fourties to mid seventies.

> Except when he was on IV fluids then they were like 100-120. OK now

> I have another question. Did anyones kids ever have high colestral

> before starting the diet? Gavins was like 208...I freaked out, I

> have always been very careful to give him good, healthy foods. His

> doctor said it was probably genitic and I couldn't do anything about

> it. Does anyone have any insite on this? Thanks again for all the

> great advise.

>

>

>

>

> " 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

>

>

>

>

>

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  • 2 years later...

I would like to just tell all you guys thank you so much for being such a great

help. Everyone here is so amazing. If at anytime I have a question or anyone

else, everybody is so quick to help. It must of taken 5 to 10 minutes for

responds with my situation for an AV therapist. I have been searching and

breaking my brain and all I had to do was just ask the best group in the

world......When in doubt, just type :)) Once again thank you all !!!!!!!

---------------------------------

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