Re: Need Opinions on Where to Start Diet

July 1, 2004

Hi,

My names Leeanne,my daughter is due to start the ketogenic diet in

the next week or two.she also has been on many AED,s which havent controlled her

seizures.She is 12 although quite small for her age and at the moment she

is off her medication,but is fitting more than ever.I have seen your message

in the ketogenic message board and hope you dont mind us emailing you.we are

really stressed out at the moment and cant wait to start the diet,but over

here in England they dont use the diet that often and only a handful of doctors

have heard of it,so we are waiting for them to get more information.Hope all

is ok with you and your family.

Leeanne and Haydn s and aged 12(England)

July 1, 2004

Hi ,

Thank you for your email,its great to know that there are other people who

understand what we are going through.I didnt see the trevor macdonald programme

although my husband did,he was absolutley astonished by the difference of

the children before and after the diet had been started.amanda has been

severley epileptic for seven years now,she started jerking first at the age of

about

18 months -2 years,since then its got worse to the stage where she can have

upto 60(yes 60) fits a day.She is constantly jerky and looks like a

robot.Shes been on epilim,Zarontin,lamotrogine,and keppra to name a few,but

none have

worked and it looks like this is the last resort.surgury is not an option as

her fits are not localised to one area of the brain ,but to all of it.We live

in crewe but there are no children at our hospital in Crewe that are even on

the diet,Most of the doctors dont even know about it.we have been told that

the main consultant who is from Alder Hey hospital in Liverpool(about 65

miles away from us)is going to oversee the beginning of it and tell the

dietician at our hospital what to do etc.at the moment we have to told just to

give

her rectal valium when she gets really bad,but its got to the stage where shes

having it every evening,the consultant has told us this is fine and to

carry on as we are but the sooner she starts on it the better.we both relize it

will be alot of hard work but she is most definately worth it.Anyway i,ll end

this for now and hopefully hear from you soon.Take Care.

Leeanne.

July 1, 2004

Hi Leeanne

Where are you doing the diet? Do you know whether you're going to be

doing the classical or mct? Where do you live? Did you see the

Tonight with Trevor Mc programme on the 21st?

I'm , my daughter Francesca has been on the classical diet with

Great Ormond Street on the trial since September 2003. She's doing

well, although she's still having some minor myoclonics which we're

working on eliminating right now. She's now drug free which is great.

You are definitely starting with an advantage if is drug free -

I really believe the diet works best without the drugs.

I don't know if you are aware, but there is a new charity in the UK -

's Friends ( www.matthewsfriends.org ) which has lots of

information regarding the diet. I have also written some 'handouts'

which I'd happily e-mail to you if you like.

You are in the right place here - there is a wealth of information.

Whatever you need, just shout.

, Mum to Francesca, Keto Kid since Sept 03, drug free and still

having jerks but I'm sure we'll sort it sooner or later (I am a very

patient person!!!)

> Hi,

> My names Leeanne,my daughter is due to start the ketogenic

diet in

> the next week or two.she also has been on many AED,s which havent

controlled her

> seizures.She is 12 although quite small for her age and at the

moment she

> is off her medication,but is fitting more than ever.I have seen

your message

> in the ketogenic message board and hope you dont mind us emailing

you.we are

> really stressed out at the moment and cant wait to start the

diet,but over

> here in England they dont use the diet that often and only a

handful of doctors

> have heard of it,so we are waiting for them to get more

information.Hope all

> is ok with you and your family.

> Leeanne and Haydn s and aged 12(England)

>

July 1, 2004

I once received a phone call from Charlie's father; did you see the

movie " first do no harm " ? The movie was based on a true story about a

boy with uncountable seizures, until they found the diet. Well, to say

the least it was an honor to speak to the actual father of Charlie. I

contacted the Charlie Foundation, and sure enough my phone call was

returned promptly by Charlie's dad. We spoke briefly by in depth and he

said look " The diet is known so well by the folks over at Hopkins, they

could do it in there sleep " . " Why not go to where some of the best of

the best are? " He at the time lived in CA I think, but made all the

adjustment necessary to bring his Charlie there to Hopkins.

I know nothing about Omaha, but if I want something that is sure to be

reliable and on point, I buy a Honda, so to speak. One can't study

enough to have the knowledge of years and years of experience. Just my

2 cents, or maybe 3...

, mom to dear sweet Ethan .

2/2003-4/2004

Need Opinions on Where to Start Diet

Our son Broc has been on several AEDs with no success. We have made the

decision to start the Ketogenic Diet. Currently we are scheduled to

start

the diet at Hopkins in August. Broc has had some issues with

eating in

the past and for that reason he has been seen at the Feeding and Growth

Clinic at Children's Hospital in Omaha, Nebraska which is close to where

we

live. The Feeding and Growth Clinic at the hospital is awful. That is

not

just our opinion but the opinion of many that we have spoken to and for

this

reason we made the decision to start the diet at another place and chose

Hopkins. We found out yesterday that the dieticians at the hospital are

not

part of this clinic and according to the nurses at Broc's neurology

clinic

many patients have been very happy starting the diet in Omaha. Omaha

would

be a much more convent place for us to start and be seen but we will do

whatever is best for our son. I plan on speaking with the dietician and

would like some suggestions on what questions to ask and also opinions

on

weather it may be an advantage to start at a place like Hopkins that

seems

to have a comprehensive program as opposed to Omaha which has a

dietician

that has administered the diet but doesn't have a program during which

several children and parents start at the same time.

Mike Bartenhagen

mike@...> mike@...

www.blackcows.com

July 1, 2004

I know there are a few family's in England that are on the diet, so I

hope you find the help you need from them. You could also try Calling

's Hopkins Hospital, in Baltimore land, USA and ask if they know

of any hospitals/clinics near you that are initiating the diet. please

ask away, the group has lots of experience, if you don't get an answer

the first time, ask again.

, momma to Ethan .

Re: Need Opinions on Where to Start Diet

Hi,

My names Leeanne,my daughter is due to start the ketogenic diet

in

the next week or two.she also has been on many AED,s which havent

controlled her

seizures.She is 12 although quite small for her age and at the moment

she

is off her medication,but is fitting more than ever.I have seen your

message

in the ketogenic message board and hope you dont mind us emailing

you.we are

really stressed out at the moment and cant wait to start the diet,but

over

here in England they dont use the diet that often and only a handful of

doctors

have heard of it,so we are waiting for them to get more information.Hope

all

is ok with you and your family.

Leeanne and Haydn s and aged 12(England)

July 1, 2004

Hi Leanne -

I am on the West Coast and happen to have a great experienced team

here to work with, but when we were first looking at starting this we

watche the " First Do No Harm " and through our research the diet was

discovered by the MAYO Clinic in 1928. Shortly after Hopkins

took over and has the most comprehensive diet program in the US. I

would definately get started there if we didn't have what we have

here. They also in my mind have the best computer program for

calculations. I hope that you are able to make a very informed

decision. But my bet, go with the experience, it can be hard enough

to start with out having to have someone figuring it out with you

ect.....

Tina - Mom to Nicky Ketokid since 8/2001

> > Hi,

> > My names Leeanne,my daughter is due to start the ketogenic

> diet in

> > the next week or two.she also has been on many AED,s which havent

> controlled her

> > seizures.She is 12 although quite small for her age and at the

> moment she

> > is off her medication,but is fitting more than ever.I have seen

> your message

> > in the ketogenic message board and hope you dont mind us

emailing

> you.we are

> > really stressed out at the moment and cant wait to start the

> diet,but over

> > here in England they dont use the diet that often and only a

> handful of doctors

> > have heard of it,so we are waiting for them to get more

> information.Hope all

> > is ok with you and your family.

> > Leeanne and Haydn s and aged 12(England)

> >

July 2, 2004

Our daughter, (6) initiated the diet at Hopkins 2 1/2 years

ago, and we were very happy with our experience there. We like the

doctors and love the dietician, Jane. We would correspond with her

by e-mail mostly, because we live in Orlando, and she always tried

her best to get back with us as quickly as she could. I am happy to

say that we have just, this week, finished weaning from the

diet!!!! She has been seizure-free for over 2 years and med free for

a year, and things are going very well. I credit our experience at

Hopkins for some of the success - they are strict compared to some

keto centers, and for the duration of her inpatient stay, we attended

classes with the dietician - we learned alot there, and would go

there again if we had to.

If you don't choose Hopkins, I would recommend finding a Hopkins-

approved center - one that follows the Hopkins protocol - if you call

them, they will tell you their opinion of the clinic you've chosen.

Please feel free to e-mail us if you have any questions or want more

info - jmom@... - anytime!

Carolyn, mom to - a very happy-to-eat-everything-now little

girl, Doose Syndrome/MAE - hopefully gone for good!

> Our son Broc has been on several AEDs with no success. We have

made the

> decision to start the Ketogenic Diet. Currently we are scheduled

to start

> the diet at Hopkins in August. Broc has had some issues with

eating in

> the past and for that reason he has been seen at the Feeding and

Growth

> Clinic at Children's Hospital in Omaha, Nebraska which is close to

where we

> live. The Feeding and Growth Clinic at the hospital is awful.

That is not

> just our opinion but the opinion of many that we have spoken to and

for this

> reason we made the decision to start the diet at another place and

chose

> Hopkins. We found out yesterday that the dieticians at the

hospital are not

> part of this clinic and according to the nurses at Broc's neurology

clinic

> many patients have been very happy starting the diet in Omaha.

Omaha would

> be a much more convent place for us to start and be seen but we

will do

> whatever is best for our son. I plan on speaking with the

dietician and

> would like some suggestions on what questions to ask and also

opinions on

> weather it may be an advantage to start at a place like Hopkins

that seems

> to have a comprehensive program as opposed to Omaha which has a

dietician

> that has administered the diet but doesn't have a program during

which

> several children and parents start at the same time.

>

> Mike Bartenhagen

> mike@b...

> www.blackcows.com

>

July 2, 2004

Our daughter, (6) initiated the diet at Hopkins 2 1/2 years

ago, and we were very happy with our experience there. We like the

doctors and love the dietician, Jane. We would correspond with her

by e-mail mostly, because we live in Orlando, and she always tried

her best to get back with us as quickly as she could. I am happy to

say that we have just, this week, finished weaning from the

diet!!!! She has been seizure-free for over 2 years and med free for

a year, and things are going very well. I credit our experience at

Hopkins for some of the success - they are strict compared to some

keto centers, and for the duration of her inpatient stay, we attended

classes with the dietician - we learned alot there, and would go

there again if we had to.

If you don't choose Hopkins, I would recommend finding a Hopkins-

approved center - one that follows the Hopkins protocol - if you call

them, they will tell you their opinion of the clinic you've chosen.

Please feel free to e-mail us if you have any questions or want more

info - jmom@... - anytime!

Carolyn, mom to - a very happy-to-eat-everything-now little

girl, Doose Syndrome/MAE - hopefully gone for good!

> Our son Broc has been on several AEDs with no success. We have

made the

> decision to start the Ketogenic Diet. Currently we are scheduled

to start

> the diet at Hopkins in August. Broc has had some issues with

eating in

> the past and for that reason he has been seen at the Feeding and

Growth

> Clinic at Children's Hospital in Omaha, Nebraska which is close to

where we

> live. The Feeding and Growth Clinic at the hospital is awful.

That is not

> just our opinion but the opinion of many that we have spoken to and

for this

> reason we made the decision to start the diet at another place and

chose

> Hopkins. We found out yesterday that the dieticians at the

hospital are not

> part of this clinic and according to the nurses at Broc's neurology

clinic

> many patients have been very happy starting the diet in Omaha.

Omaha would

> be a much more convent place for us to start and be seen but we

will do

> whatever is best for our son. I plan on speaking with the

dietician and

> would like some suggestions on what questions to ask and also

opinions on

> weather it may be an advantage to start at a place like Hopkins

that seems

> to have a comprehensive program as opposed to Omaha which has a

dietician

> that has administered the diet but doesn't have a program during

which

> several children and parents start at the same time.

>

> Mike Bartenhagen

> mike@b...

> www.blackcows.com

>

July 2, 2004

Our daughter, (6) initiated the diet at Hopkins 2 1/2 years

ago, and we were very happy with our experience there. We like the

doctors and love the dietician, Jane. We would correspond with her

by e-mail mostly, because we live in Orlando, and she always tried

her best to get back with us as quickly as she could. I am happy to

say that we have just, this week, finished weaning from the

diet!!!! She has been seizure-free for over 2 years and med free for

a year, and things are going very well. I credit our experience at

Hopkins for some of the success - they are strict compared to some

keto centers, and for the duration of her inpatient stay, we attended

classes with the dietician - we learned alot there, and would go

there again if we had to.

If you don't choose Hopkins, I would recommend finding a Hopkins-

approved center - one that follows the Hopkins protocol - if you call

them, they will tell you their opinion of the clinic you've chosen.

Please feel free to e-mail us if you have any questions or want more

info - jmom@... - anytime!

Carolyn, mom to - a very happy-to-eat-everything-now little

girl, Doose Syndrome/MAE - hopefully gone for good!

> Our son Broc has been on several AEDs with no success. We have

made the

> decision to start the Ketogenic Diet. Currently we are scheduled

to start

> the diet at Hopkins in August. Broc has had some issues with

eating in

> the past and for that reason he has been seen at the Feeding and

Growth

> Clinic at Children's Hospital in Omaha, Nebraska which is close to

where we

> live. The Feeding and Growth Clinic at the hospital is awful.

That is not

> just our opinion but the opinion of many that we have spoken to and

for this

> reason we made the decision to start the diet at another place and

chose

> Hopkins. We found out yesterday that the dieticians at the

hospital are not

> part of this clinic and according to the nurses at Broc's neurology

clinic

> many patients have been very happy starting the diet in Omaha.

Omaha would

> be a much more convent place for us to start and be seen but we

will do

> whatever is best for our son. I plan on speaking with the

dietician and

> would like some suggestions on what questions to ask and also

opinions on

> weather it may be an advantage to start at a place like Hopkins

that seems

> to have a comprehensive program as opposed to Omaha which has a

dietician

> that has administered the diet but doesn't have a program during

which

> several children and parents start at the same time.

>

> Mike Bartenhagen

> mike@b...

> www.blackcows.com

>

July 6, 2004

Thank you all for your opinions. We have decided to stick with Hopkins. I

spoke with the person that administers the diet in Omaha and she has only

done 8 kids (which is only 8 more than I have) and she has had no formal

training she is just learning as she goes.

Mike

_____

From: Atyeo

Sent: Thursday, July 01, 2004 10:23 AM

To: ketogenic

Subject: RE: Need Opinions on Where to Start Diet