Re: Introduction/Questions

July 28, 2003

The diet may be for life, or it may be for 3 years. The seizures will

probably be for life, but may be reduced significantly when you start

the diet. Your daughter will likely be more alert on the diet. It is

difficult to maintain the diet. The reductions in seizures and

improvement in your child should make it worth it. My daughter eats by

mouth and gets liquids through a g-tube. It is perhaps slightly easier

to do the diet with a tube because some of the fat can be ingested that

way. Some children do the diet entirely through the g-tube.

Good luck,

Bill

Sharon Fitzgerald wrote:

> Hello,

>

> My daughter is 2 years old and her seizures have been uncontrolled

> by numerous AEDs. She has been on dilantin, phenobarb, depakote,

> mysoline, keppra, topomax and several others. They all seem to

> blend together over time. She is currently only on clonopin, but

> her seizures have become more intense and I am tired of the

> medication game. So I have been considering the diet for a while

> and have read about it and even contacted Dr. Freeman.

>

> I guess my biggest question is once you start is it for life? and

> how difficult is it to maintain? Is anyone doing it using a feeding

> tube?

>

> My daughter has recently started eating orally, but still is

> dependent on the tube for liquids. I was wondering if it can work if

> your child doesn't eat orally very well?

>

> Sorry if these questions seem silly, but I would appreciate any

> information.

>

> Sincerely,

> Sharon Fitzgerald

>

> " 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

>

July 28, 2003

Thanks for your reply. If you decide to stop the diet after a year

would you more than likely have to go back to the medication game?

Sharon

Re: Introduction/Questions

The diet may be for life, or it may be for 3 years. The seizures will

probably be for life, but may be reduced significantly when you start

the diet. Your daughter will likely be more alert on the diet. It is

difficult to maintain the diet. The reductions in seizures and

improvement in your child should make it worth it. My daughter eats by

mouth and gets liquids through a g-tube. It is perhaps slightly easier

to do the diet with a tube because some of the fat can be ingested that

way. Some children do the diet entirely through the g-tube.

Good luck,

Bill

Sharon Fitzgerald wrote:

> Hello,

>

> My daughter is 2 years old and her seizures have been uncontrolled

> by numerous AEDs. She has been on dilantin, phenobarb, depakote,

> mysoline, keppra, topomax and several others. They all seem to

> blend together over time. She is currently only on clonopin, but

> her seizures have become more intense and I am tired of the

> medication game. So I have been considering the diet for a while

> and have read about it and even contacted Dr. Freeman.

>

> I guess my biggest question is once you start is it for life? and

> how difficult is it to maintain? Is anyone doing it using a feeding

> tube?

>

> My daughter has recently started eating orally, but still is

> dependent on the tube for liquids. I was wondering if it can work if

> your child doesn't eat orally very well?

>

> Sorry if these questions seem silly, but I would appreciate any

> information.

>

> Sincerely,

> Sharon Fitzgerald

>

> " 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

>

July 28, 2003

Thanks for your reply. If you decide to stop the diet after a year

would you more than likely have to go back to the medication game?

Sharon

Re: Introduction/Questions

The diet may be for life, or it may be for 3 years. The seizures will

probably be for life, but may be reduced significantly when you start

the diet. Your daughter will likely be more alert on the diet. It is

difficult to maintain the diet. The reductions in seizures and

improvement in your child should make it worth it. My daughter eats by

mouth and gets liquids through a g-tube. It is perhaps slightly easier

to do the diet with a tube because some of the fat can be ingested that

way. Some children do the diet entirely through the g-tube.

Good luck,

Bill

Sharon Fitzgerald wrote:

> Hello,

>

> My daughter is 2 years old and her seizures have been uncontrolled

> by numerous AEDs. She has been on dilantin, phenobarb, depakote,

> mysoline, keppra, topomax and several others. They all seem to

> blend together over time. She is currently only on clonopin, but

> her seizures have become more intense and I am tired of the

> medication game. So I have been considering the diet for a while

> and have read about it and even contacted Dr. Freeman.

>

> I guess my biggest question is once you start is it for life? and

> how difficult is it to maintain? Is anyone doing it using a feeding

> tube?

>

> My daughter has recently started eating orally, but still is

> dependent on the tube for liquids. I was wondering if it can work if

> your child doesn't eat orally very well?

>

> Sorry if these questions seem silly, but I would appreciate any

> information.

>

> Sincerely,

> Sharon Fitzgerald

>

> " 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

>

July 28, 2003

Hi Sharon and welcome to the group. The diet can be very successful in

instances where meds have failed. I just finished weaning my daughter

off of klonipin and it took a year! But she is SO much better off of

meds. Lots of people do the diet with a tube. There are keto formulas

you can use and that would be a great way to get the fat part in, like

Bill said. The fat part of the diet is the hardest for our kids...

Hardly palatable at all. But if she moves to more solid foods we can

help you with tips and recipes. The diet does involve weighing foods

with a gram scale but it isn't difficult. A dietician will give you

meal plans based on what your daughter likes and you just fill the order

and serve. You will likely get your child back by trying the diet. If

she goes for a year seizure free on the diet, the doctors will guide you

in slowly weaning her off of it. If she's never completely seizure free

on it, you can make the choice of whether she is better on the diet than

on meds and stop if you wish.

We are here for any questions you have AT ALL.

Ann Shepard

Introduction/Questions

Hello,

My daughter is 2 years old and her seizures have been uncontrolled

by numerous AEDs. She has been on dilantin, phenobarb, depakote,

mysoline, keppra, topomax and several others. They all seem to

blend together over time. She is currently only on clonopin, but

her seizures have become more intense and I am tired of the

medication game. So I have been considering the diet for a while

and have read about it and even contacted Dr. Freeman.

I guess my biggest question is once you start is it for life? and

how difficult is it to maintain? Is anyone doing it using a feeding

tube?

My daughter has recently started eating orally, but still is

dependent on the tube for liquids. I was wondering if it can work if

your child doesn't eat orally very well?

Sorry if these questions seem silly, but I would appreciate any

information.

Sincerely,

Sharon Fitzgerald

" 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

July 28, 2003

Sharon,

Welcome to the group. Have you read Dr. Freeman's book? The ideal scenario for

the Keto diet is certainly not that it be a lifetime thing. Numerous kids have

done the diet for a couple of years and then successfully weaned off and

remained seizure free. Others need to go back to the diet for longer. Each kid

is unique. Meds usually complicate the picture, and some of them are addictive

and difficult to wean...... but many of the parents here have been down that

road and can give you support and advice. I think in the long run, the diet can

work best when on it's own..... once all the meds are gone. But, there are some

who have to rely on a combination of diet and meds. We all do what we gotta do.

Seizure free without intolerable side-effects is what we all want. The diet

might seem overwhelming at first.... but you quickly get used to it. There are

lots of little fine-tuning tips that we can offer once you get going. Best

advice... start the diet under the care of a supportive and Keto-experienced

neuro who has a good dietician and support staff.

best of luck!

Patti, list moderator and mom to Katera, age 6 (almost 7)..... former Keto Kid

for over two years, current SCDiet Kid (since 4-14-03) and doing better.

Introduction/Questions

<<My daughter is 2 years old and her seizures have been uncontrolled by

numerous AEDs.>> <<I guess my biggest question is once you start is it for

life? and how difficult is it to maintain?>>

July 28, 2003