Re: Why is the Ketogenic Diet a Last Resort?

[Guest guest]

Hi

No you are not being too simplistic

Cammie, in one of her posts, said it ever so nicely--talking about the

Pharmaceutical " DETAIL " salesperson

It is a money-making proposition, for the companies, and many " PERKS " for the

docs, using the meds---yes, sometimes at the expense of our children

It is easier to " pop " a pill--IF it were that easy

IF one pill would erase all the seizures--EVERY one of them--why not?

IF just one pill would give NO side-effects--NONE--(which can be worse than

the seizure, itself)

How many have found this?

We would not be here-if this was true

SOOOO--with all us parents, we need to spread the word, we need to educate,

just like Charlie's dad did

His dad, being such a prominent figure, making a movie,---this gave the

public valuable knowledge

MEDIA--MEDIA--

All this is helping our children

In med school, they learn about drugs--knowing diet helps the human body

But they do not study diets as " treatments " just " preventative "

So---you ask WHY AS A LAST RESORT??

Just wait for our kids to voice their opinions--just wait--for us parents to

be heard

It is happening already

Read the posts--some of these children are now under 2 yrs old--YEA!!!

Tell your pediatricians--and tell everyone in the ER's

They are usually the first ones to see a child with a seizure

Then tell EVERYONE associated with your childs care, PT. OT, SPEECH, PSYCH,

etc...

Our Neuros know and see the wonders of this diet--they need to TRY it

FIRST--NOT LAST!!

On another note, the diet is not " HARD " but it is harder than popping a pill

So until we see all the nasty side effects, or hear of them--

I mean really hear about the ones we see-not just what the drug co say

We will still see a " pill-popping " society

With the Atkins Craze & counting Net Carbs--Maybe our Keto Diet and the

Atkins approach -- will all seem so " right "

Thank-you

Sandi

[Guest guest]

Hi

No you are not being too simplistic

Cammie, in one of her posts, said it ever so nicely--talking about the

Pharmaceutical " DETAIL " salesperson

It is a money-making proposition, for the companies, and many " PERKS " for the

docs, using the meds---yes, sometimes at the expense of our children

It is easier to " pop " a pill--IF it were that easy

IF one pill would erase all the seizures--EVERY one of them--why not?

IF just one pill would give NO side-effects--NONE--(which can be worse than

the seizure, itself)

How many have found this?

We would not be here-if this was true

SOOOO--with all us parents, we need to spread the word, we need to educate,

just like Charlie's dad did

His dad, being such a prominent figure, making a movie,---this gave the

public valuable knowledge

MEDIA--MEDIA--

All this is helping our children

In med school, they learn about drugs--knowing diet helps the human body

But they do not study diets as " treatments " just " preventative "

So---you ask WHY AS A LAST RESORT??

Just wait for our kids to voice their opinions--just wait--for us parents to

be heard

It is happening already

Read the posts--some of these children are now under 2 yrs old--YEA!!!

Tell your pediatricians--and tell everyone in the ER's

They are usually the first ones to see a child with a seizure

Then tell EVERYONE associated with your childs care, PT. OT, SPEECH, PSYCH,

etc...

Our Neuros know and see the wonders of this diet--they need to TRY it

FIRST--NOT LAST!!

On another note, the diet is not " HARD " but it is harder than popping a pill

So until we see all the nasty side effects, or hear of them--

I mean really hear about the ones we see-not just what the drug co say

We will still see a " pill-popping " society

With the Atkins Craze & counting Net Carbs--Maybe our Keto Diet and the

Atkins approach -- will all seem so " right "

Thank-you

Sandi

[Guest guest]

Thank you for that response, because I so feel that this diet is

brilliant and should be tried first. If it doesn't work, what have

you lost? Certainly not all the developmental problems and other

side effects that are related to the drugs.

I never look back to what might have been as it's kind of pointless,

but I am very, very lucky in that Francesca's progress on the diet is

being filmed on an ongoing basis to show on TV in the UK. It's a

programme called 'Tonight with Trevor Mc' and it covers the

stories behind the headlines. They have been filming Francesca and

another family since before they started the diet in September and

are wanting to show the positive progress made. Of course it's not

all a bed of roses, but we are really beginning to see our old

Francesca come back. This morning, she cried when her sister walked

off in a strop and wouldn't give her a hug. When she then did, she

said " I love you Anya " . I have never seen her showing emotions like

this.

I personally really want to shout about the Ketogenic Diet and want

people to hear that it should be a first choice if parents are

willing to try it. What I really need is for as many people in the

UK as possible to watch it (so watch this space UK list members, I'll

let you know when it's going to be on so that you can spread the

word), so that we can start really campaigning for more dieticians

and doctors to take it on board as an option, let alone a first

option.

I imagine the filming will continue until both children are off the

drugs, fingers crossed, we're both half way through the wean and

going OK.

I would so love to be a Jim Abrahams in the UK, maybe if I win the

lottery...

Thanks for listening

, Mum to Francesca, 6, keto kid since Sept 03

> Hi

> No you are not being too simplistic

> Cammie, in one of her posts, said it ever so nicely--talking about

the

> Pharmaceutical " DETAIL " salesperson

> It is a money-making proposition, for the companies, and

many " PERKS " for the

> docs, using the meds---yes, sometimes at the expense of our children

> It is easier to " pop " a pill--IF it were that easy

> IF one pill would erase all the seizures--EVERY one of them--why

not?

> IF just one pill would give NO side-effects--NONE--(which can be

worse than

> the seizure, itself)

> How many have found this?

> We would not be here-if this was true

> SOOOO--with all us parents, we need to spread the word, we need to

educate,

> just like Charlie's dad did

> His dad, being such a prominent figure, making a movie,---this gave

the

> public valuable knowledge

> MEDIA--MEDIA--

> All this is helping our children

>

> In med school, they learn about drugs--knowing diet helps the human

body

> But they do not study diets as " treatments " just " preventative "

> So---you ask WHY AS A LAST RESORT??

> Just wait for our kids to voice their opinions--just wait--for us

parents to

> be heard

> It is happening already

> Read the posts--some of these children are now under 2 yrs old--

YEA!!!

> Tell your pediatricians--and tell everyone in the ER's

> They are usually the first ones to see a child with a seizure

> Then tell EVERYONE associated with your childs care, PT. OT,

SPEECH, PSYCH,

> etc...

> Our Neuros know and see the wonders of this diet--they need to TRY

it

> FIRST--NOT LAST!!

> On another note, the diet is not " HARD " but it is harder than

popping a pill

> So until we see all the nasty side effects, or hear of them--

> I mean really hear about the ones we see-not just what the drug co

say

> We will still see a " pill-popping " society

> With the Atkins Craze & counting Net Carbs--Maybe our Keto Diet

and the

> Atkins approach -- will all seem so " right "

> Thank-you

> Sandi

>

>

>

[Guest guest]

I think it's just that they doubt parents and children will comply

and that it's too restrictive. When I asked about it, Sev was 10

months old and had been on 8 meds already with only worsening

seizures and bad side effects. The doctor's response... " You think

you're miserable now...wait till you try that diet! " I think with

the new meds, it just fell by the wayside and got a bad reputation in

the face of meds which are easy to take. The reputation just

continued to grow until many doctor's had no experience with the

diet, and had only heard how hard it was and how restrictive. Then

along came the internet and parents began hearing about it on their

own. The support groups were started and parents got more POSITIVE

about the diet and it's possibilities. I think doctor's are actually

just behind the curve now. But the tide is turning and I think soon

it will be an option that is discussed earlier on in the treatment

plan. Especially now that the adkins diet seems to be having some

effectiveness now. That's an easy way to test the waters.

I try very hard not to be bitter with our first neuro. I honestly

feel it was MALPRACTICE not to dicuss the diet with us early on when

it was obvious meds were not going to help. All legitimate research

shows that it is next to impossible to find a med that will work

after the first two attempted. But that's water under the bridge and

he now routinely talks to parents about the diet. So some progress

was made! Nan

[Guest guest]

will be going to Seattle to initiate in April,and a week ago

he had a series of tonic clonics that sent him to the hospital. This

one doctor came in and said he's going on keto poor kid and boy is

life going to be hard.I was so angry at this.How hard is life now

with meds,side effects,countless doctors appointments and in and out

hospital stays.I just kept thinking how dare she say this in front of

my son who's actually excited at the prospect of being seizure free.I

am thankful I have an absolutely wonderful neuro who has given us

every option,discusses side effects and risks and is all for us doing

the diet.He actually used to help initiate patients himself.I think

in our I want it now society no one wants to take the time to do the

diet or so most doctors think they don't.I would have much rather

done the diet than to have gone through 6 different meds with

horrible side effects including actually making his seizures

worst.Linn

[Guest guest]

will be going to Seattle to initiate in April,and a week ago

he had a series of tonic clonics that sent him to the hospital. This

one doctor came in and said he's going on keto poor kid and boy is

life going to be hard.I was so angry at this.How hard is life now

with meds,side effects,countless doctors appointments and in and out

hospital stays.I just kept thinking how dare she say this in front of

my son who's actually excited at the prospect of being seizure free.I

am thankful I have an absolutely wonderful neuro who has given us

every option,discusses side effects and risks and is all for us doing

the diet.He actually used to help initiate patients himself.I think

in our I want it now society no one wants to take the time to do the

diet or so most doctors think they don't.I would have much rather

done the diet than to have gone through 6 different meds with

horrible side effects including actually making his seizures

worst.Linn

[Guest guest]

will be going to Seattle to initiate in April,and a week ago

he had a series of tonic clonics that sent him to the hospital. This

one doctor came in and said he's going on keto poor kid and boy is

life going to be hard.I was so angry at this.How hard is life now

with meds,side effects,countless doctors appointments and in and out

hospital stays.I just kept thinking how dare she say this in front of

my son who's actually excited at the prospect of being seizure free.I

am thankful I have an absolutely wonderful neuro who has given us

every option,discusses side effects and risks and is all for us doing

the diet.He actually used to help initiate patients himself.I think

in our I want it now society no one wants to take the time to do the

diet or so most doctors think they don't.I would have much rather

done the diet than to have gone through 6 different meds with

horrible side effects including actually making his seizures

worst.Linn

[Guest guest]

Yes

I asked about the diet, when my daughter was an infant

" she did not have the right kind of seizures "

" she was not on enough med combinations "

" she did not have enough seizures a day "

Wow!!!

If I only knew what I know today

If I only had the support from this group back then

Almost 7 years later, after numerous meds, too many side effects,

developmental delays, the life just sucked out of her--we decided to put her on

the diet

BUT only with the Neuros saying

" she knows food, she will never stick to the diet "

" it will be too hard for her and the family to do the diet "

Guess they thought they knew us better than we knew ourselves

We did start the diet, after finally convincing a neuro to give her a chance

and during the initiation of the diet, nurses and neuro wanted us to

stop--and resume meds (she was having seizures in the hospital

My daughter told the doc-- " I am doing the diet "

Here we are 35 months later

Not seizure free, but close enough

She is a real kid now

I do think the medical profession is leaning toward " diet " as treatment --or

at least many have to listen to all of us!

Sandi

[Guest guest]

Yes

I asked about the diet, when my daughter was an infant

" she did not have the right kind of seizures "

" she was not on enough med combinations "

" she did not have enough seizures a day "

Wow!!!

If I only knew what I know today

If I only had the support from this group back then

Almost 7 years later, after numerous meds, too many side effects,

developmental delays, the life just sucked out of her--we decided to put her on

the diet

BUT only with the Neuros saying

" she knows food, she will never stick to the diet "

" it will be too hard for her and the family to do the diet "

Guess they thought they knew us better than we knew ourselves

We did start the diet, after finally convincing a neuro to give her a chance

and during the initiation of the diet, nurses and neuro wanted us to

stop--and resume meds (she was having seizures in the hospital

My daughter told the doc-- " I am doing the diet "

Here we are 35 months later

Not seizure free, but close enough

She is a real kid now

I do think the medical profession is leaning toward " diet " as treatment --or

at least many have to listen to all of us!

Sandi

[Guest guest]

Yes

I asked about the diet, when my daughter was an infant

" she did not have the right kind of seizures "

" she was not on enough med combinations "

" she did not have enough seizures a day "

Wow!!!

If I only knew what I know today

If I only had the support from this group back then

Almost 7 years later, after numerous meds, too many side effects,

developmental delays, the life just sucked out of her--we decided to put her on

the diet

BUT only with the Neuros saying

" she knows food, she will never stick to the diet "

" it will be too hard for her and the family to do the diet "

Guess they thought they knew us better than we knew ourselves

We did start the diet, after finally convincing a neuro to give her a chance

and during the initiation of the diet, nurses and neuro wanted us to

stop--and resume meds (she was having seizures in the hospital

My daughter told the doc-- " I am doing the diet "

Here we are 35 months later

Not seizure free, but close enough

She is a real kid now

I do think the medical profession is leaning toward " diet " as treatment --or

at least many have to listen to all of us!

Sandi

[Guest guest]

, I totally agree with you. When my son Austin was maybe 3-4 yrs old I

asked his neurologist at the time about the ketogenic diet because it had been

brought up to me and he just completely blew it off because " Austin was not a

candidate for the diet " and his reasoning for that was the fact that Austin was

in school (preschool at the time) and if a kid gave him something to eat off the

diet it would throw it all off.....Thats how simplistic his reasoning was. Now

looking back at it, I am a little angry with myself to think that I didnt push

the issue for my son. But, I cant do anything about the past but I can do

something now. He is now 8 yrs old soon to be 9 and I FINALLY have a

neurologist that is WONDERFUL in support and heads the ketogenic group at

Bostons Childrens Hospital. We start the diet the 17th of this month. I am

really really hopeful for this diet to work. We have had wayyyyyy too many

disappointing meds that we have dealt with and its time to stop. So, my point

here is, I dont think you are being simplistic, I think you are right on the

money! Best Wishes!..........Tammy

[Guest guest]

, I totally agree with you. When my son Austin was maybe 3-4 yrs old I

asked his neurologist at the time about the ketogenic diet because it had been

brought up to me and he just completely blew it off because " Austin was not a

candidate for the diet " and his reasoning for that was the fact that Austin was

in school (preschool at the time) and if a kid gave him something to eat off the

diet it would throw it all off.....Thats how simplistic his reasoning was. Now

looking back at it, I am a little angry with myself to think that I didnt push

the issue for my son. But, I cant do anything about the past but I can do

something now. He is now 8 yrs old soon to be 9 and I FINALLY have a

neurologist that is WONDERFUL in support and heads the ketogenic group at

Bostons Childrens Hospital. We start the diet the 17th of this month. I am

really really hopeful for this diet to work. We have had wayyyyyy too many

disappointing meds that we have dealt with and its time to stop. So, my point

here is, I dont think you are being simplistic, I think you are right on the

money! Best Wishes!..........Tammy

[Guest guest]

, I totally agree with you. When my son Austin was maybe 3-4 yrs old I

asked his neurologist at the time about the ketogenic diet because it had been

brought up to me and he just completely blew it off because " Austin was not a

candidate for the diet " and his reasoning for that was the fact that Austin was

in school (preschool at the time) and if a kid gave him something to eat off the

diet it would throw it all off.....Thats how simplistic his reasoning was. Now

looking back at it, I am a little angry with myself to think that I didnt push

the issue for my son. But, I cant do anything about the past but I can do

something now. He is now 8 yrs old soon to be 9 and I FINALLY have a

neurologist that is WONDERFUL in support and heads the ketogenic group at

Bostons Childrens Hospital. We start the diet the 17th of this month. I am

really really hopeful for this diet to work. We have had wayyyyyy too many

disappointing meds that we have dealt with and its time to stop. So, my point

here is, I dont think you are being simplistic, I think you are right on the

money! Best Wishes!..........Tammy

[Guest guest]

perfectly put Sandi!

From: SJVC5@...

Date: 2004/02/07 Sat AM 07:19:15 EST

To: ketogenic

Subject: Re: Why is the Ketogenic Diet a Last Resort?

[Guest guest]

perfectly put Sandi!

From: SJVC5@...

Date: 2004/02/07 Sat AM 07:19:15 EST

To: ketogenic

Subject: Re: Why is the Ketogenic Diet a Last Resort?

[Guest guest]

perfectly put Sandi!

From: SJVC5@...

Date: 2004/02/07 Sat AM 07:19:15 EST

To: ketogenic

Subject: Re: Why is the Ketogenic Diet a Last Resort?

[Guest guest]

But doesn't it make you so mad when you look back and think of many years of

your child's life have been wasted as yet another drug was tried to

ill-effect? There is an 18month - 2 year period of my daughter's life that

I think, well, I know, that she was not aware of who she was of where she

was. At times she didn't even recognise us or her grandparents. Thanks to

AEDs.

Ginny

[Guest guest]

But doesn't it make you so mad when you look back and think of many years of

your child's life have been wasted as yet another drug was tried to

ill-effect? There is an 18month - 2 year period of my daughter's life that

I think, well, I know, that she was not aware of who she was of where she

was. At times she didn't even recognise us or her grandparents. Thanks to

AEDs.

Ginny

[Guest guest]

But doesn't it make you so mad when you look back and think of many years of

your child's life have been wasted as yet another drug was tried to

ill-effect? There is an 18month - 2 year period of my daughter's life that

I think, well, I know, that she was not aware of who she was of where she

was. At times she didn't even recognise us or her grandparents. Thanks to

AEDs.

Ginny

[Guest guest]

Yes Ginny, it makes me extremely angry when I think back on things.....it took

them SEVEN years to even diagnose that my son was Autistic. I have had a great

battle with getting things NOTICED with my son. So I have alot of resentment

but I try to just look forward because thats the only way I will get things

done. I think alot of Austins problems in school have been because of

meds...being in a fog...they cant believe the difference in him once he comes

off the meds.....same as this last attempt at Keppra...he was horrible in

school! and it just so happened that it was at the start of school with a new

teacher and she knew no different of Austin than what she was seeing....then

once we took him off the Keppra, she couldnt believe the new little boy she was

dealing with....I hate what the meds do to him. Im praying this diet works for

him and no more meds! We'll soon see....Tammy

Date: 2004/02/07 Sat PM 11:55:24 EST

To: ketogenic

Subject: Re: Why is the Ketogenic Diet a Last Resort?

[Guest guest]

Good Question, !

The docs just don't recommend it, I suppose, because they don't

really know much about it. (There's no " detail " person visiting

their offices pushing the diet like they are there pushing drugs.)

They probably " don't " have time to research it on their own. Most

docs DON'T research drugs on their own either, they just rely on the

drug detailers. There's no money to be made from patients on the

diet because you can't patent food. If any of you saw the most

recent Dateline interview with Jim and Charlie Abrahams last summer,

their doctor even " mentioned " that. He spoke about how he was

clearly against Charlie trying the diet, but has now changed his mind

about recommending it. In my opinion, we all owe A LOT to the

Abrahams family for getting word about the diet out there. I'm so

sorry Charlie had to go through everyting he did. But, the blessing

there is that so many other kids were helped (and are now being

helped) because his family went full steam ahead to " publicize " the

diet. And now, Charlie is doing just fine. Who knows what would

have happened to him and countless other kids if his father

hadn't " stumbled " onto information about the keto diet?

" It's just easier to take a pill " Well, yes, it is if the pill works

to stop your seizures and doesn't make you a zombie whilst doing

that. So, sure, I'm for trying one drug first. Then, MAYBE trying a

second drug. But at that point it's time to start talking about the

diet. Actually, the talking should start at the onset... " If this

drug doesn't work and maybe another... there's a diet therapy we

should consider " Did anybody here hear anything similar to that,

even after 2 meds failed???? I surely didn't. Luckily for me, I

knew about the diet -- but I was actually in the " dark ages " with

regard to how hard it is, its success rate, etc. Once I started

reading, I was astounded at the success stories that abound.

I have to say somewhat in our neuro's defense... he hadn't had many

patients even try the diet and those who did didn't have great

experiences. One, I know it because of their keto team. They chose

to go elsewhere than we are going. Most of the others, I think, gave

up too soon. The last patient he referred for diet therapy did

complete the 2 years on the diet, weaned off and has been seizure

free ever since. I think he's been off the diet about 4 yrs. now.

Now, with our successful experience, our neuro has really perked his

ears up. So, maybe it's a matter of us parents " educating " the

docs. I also told him (and he knows this, too, I would think) that

all keto teams are not created equal. Anyone from our very wide area

would have to travel to get to a keto team. We chose to drive about

5.5 hrs. There are many places one could fly. Yes, that's a pain,

but we would fly to China (that's about half way around the world

from us!) to get what we have now on the diet, if that was the only

place in the world we could get it. I know there are many people who

fly to Hopkins from " everywhere " because they think they will have

the best experience there.

I think we parents have to be more vocal with our docs. I think EFA

has a place on their website for success stories. If that's true,

maybe all of us should post ours. I know they get a lot of traffic

on their site. Our daughter is having minor surgery on her ear this

week. When I was talking with the nurse to set it up, I was telling

her about the diet and what kind of IV fluid she could have, etc.

Turns out that she has a nephew with uncontrolled seizures. I told

her to tell her sister to talk to her neuro ASAP. If she gets flack,

I told her to call our neuro. I told her to give her sister my phone

number, too, if she wanted to talk about the diet. We've just got to

get the word out that the diet is a worthwhile option.

Cammie

[Guest guest]

Good Question, !

The docs just don't recommend it, I suppose, because they don't

really know much about it. (There's no " detail " person visiting

their offices pushing the diet like they are there pushing drugs.)

They probably " don't " have time to research it on their own. Most

docs DON'T research drugs on their own either, they just rely on the

drug detailers. There's no money to be made from patients on the

diet because you can't patent food. If any of you saw the most

recent Dateline interview with Jim and Charlie Abrahams last summer,

their doctor even " mentioned " that. He spoke about how he was

clearly against Charlie trying the diet, but has now changed his mind

about recommending it. In my opinion, we all owe A LOT to the

Abrahams family for getting word about the diet out there. I'm so

sorry Charlie had to go through everyting he did. But, the blessing

there is that so many other kids were helped (and are now being

helped) because his family went full steam ahead to " publicize " the

diet. And now, Charlie is doing just fine. Who knows what would

have happened to him and countless other kids if his father

hadn't " stumbled " onto information about the keto diet?

" It's just easier to take a pill " Well, yes, it is if the pill works

to stop your seizures and doesn't make you a zombie whilst doing

that. So, sure, I'm for trying one drug first. Then, MAYBE trying a

second drug. But at that point it's time to start talking about the

diet. Actually, the talking should start at the onset... " If this

drug doesn't work and maybe another... there's a diet therapy we

should consider " Did anybody here hear anything similar to that,

even after 2 meds failed???? I surely didn't. Luckily for me, I

knew about the diet -- but I was actually in the " dark ages " with

regard to how hard it is, its success rate, etc. Once I started

reading, I was astounded at the success stories that abound.

I have to say somewhat in our neuro's defense... he hadn't had many

patients even try the diet and those who did didn't have great

experiences. One, I know it because of their keto team. They chose

to go elsewhere than we are going. Most of the others, I think, gave

up too soon. The last patient he referred for diet therapy did

complete the 2 years on the diet, weaned off and has been seizure

free ever since. I think he's been off the diet about 4 yrs. now.

Now, with our successful experience, our neuro has really perked his

ears up. So, maybe it's a matter of us parents " educating " the

docs. I also told him (and he knows this, too, I would think) that

all keto teams are not created equal. Anyone from our very wide area

would have to travel to get to a keto team. We chose to drive about

5.5 hrs. There are many places one could fly. Yes, that's a pain,

but we would fly to China (that's about half way around the world

from us!) to get what we have now on the diet, if that was the only

place in the world we could get it. I know there are many people who

fly to Hopkins from " everywhere " because they think they will have

the best experience there.

I think we parents have to be more vocal with our docs. I think EFA

has a place on their website for success stories. If that's true,

maybe all of us should post ours. I know they get a lot of traffic

on their site. Our daughter is having minor surgery on her ear this

week. When I was talking with the nurse to set it up, I was telling

her about the diet and what kind of IV fluid she could have, etc.

Turns out that she has a nephew with uncontrolled seizures. I told

her to tell her sister to talk to her neuro ASAP. If she gets flack,

I told her to call our neuro. I told her to give her sister my phone

number, too, if she wanted to talk about the diet. We've just got to

get the word out that the diet is a worthwhile option.

Cammie

[Guest guest]

Good Question, !

The docs just don't recommend it, I suppose, because they don't

really know much about it. (There's no " detail " person visiting

their offices pushing the diet like they are there pushing drugs.)

They probably " don't " have time to research it on their own. Most

docs DON'T research drugs on their own either, they just rely on the

drug detailers. There's no money to be made from patients on the

diet because you can't patent food. If any of you saw the most

recent Dateline interview with Jim and Charlie Abrahams last summer,

their doctor even " mentioned " that. He spoke about how he was

clearly against Charlie trying the diet, but has now changed his mind

about recommending it. In my opinion, we all owe A LOT to the

Abrahams family for getting word about the diet out there. I'm so

sorry Charlie had to go through everyting he did. But, the blessing

there is that so many other kids were helped (and are now being

helped) because his family went full steam ahead to " publicize " the

diet. And now, Charlie is doing just fine. Who knows what would

have happened to him and countless other kids if his father

hadn't " stumbled " onto information about the keto diet?

" It's just easier to take a pill " Well, yes, it is if the pill works

to stop your seizures and doesn't make you a zombie whilst doing

that. So, sure, I'm for trying one drug first. Then, MAYBE trying a

second drug. But at that point it's time to start talking about the

diet. Actually, the talking should start at the onset... " If this

drug doesn't work and maybe another... there's a diet therapy we

should consider " Did anybody here hear anything similar to that,

even after 2 meds failed???? I surely didn't. Luckily for me, I

knew about the diet -- but I was actually in the " dark ages " with

regard to how hard it is, its success rate, etc. Once I started

reading, I was astounded at the success stories that abound.

I have to say somewhat in our neuro's defense... he hadn't had many

patients even try the diet and those who did didn't have great

experiences. One, I know it because of their keto team. They chose

to go elsewhere than we are going. Most of the others, I think, gave

up too soon. The last patient he referred for diet therapy did

complete the 2 years on the diet, weaned off and has been seizure

free ever since. I think he's been off the diet about 4 yrs. now.

Now, with our successful experience, our neuro has really perked his

ears up. So, maybe it's a matter of us parents " educating " the

docs. I also told him (and he knows this, too, I would think) that

all keto teams are not created equal. Anyone from our very wide area

would have to travel to get to a keto team. We chose to drive about

5.5 hrs. There are many places one could fly. Yes, that's a pain,

but we would fly to China (that's about half way around the world

from us!) to get what we have now on the diet, if that was the only

place in the world we could get it. I know there are many people who

fly to Hopkins from " everywhere " because they think they will have

the best experience there.

I think we parents have to be more vocal with our docs. I think EFA

has a place on their website for success stories. If that's true,

maybe all of us should post ours. I know they get a lot of traffic

on their site. Our daughter is having minor surgery on her ear this

week. When I was talking with the nurse to set it up, I was telling

her about the diet and what kind of IV fluid she could have, etc.

Turns out that she has a nephew with uncontrolled seizures. I told

her to tell her sister to talk to her neuro ASAP. If she gets flack,

I told her to call our neuro. I told her to give her sister my phone

number, too, if she wanted to talk about the diet. We've just got to

get the word out that the diet is a worthwhile option.

Cammie