Re: finding a hospital that can help us

[Guest guest]

Hi Nicky

You are definitely in the right place for information here. As for a

hospital, I personally don't know the answer to that one, but if you

contact Emma at www.matthewsfriends.org - she has just set up a

charity in the UK to try and raise awareness of the diet and to make

it more available. She might be able to give you a hospital name,

I'm not sure.

Your timing is unbelievable! Tonight with Trevor Mc is showing

a programme on Monday night at 8 pm (who cares about Croatia vs

England!) about the Ketogenic Diet. They have followed my daughter,

Francesca, and another family in Plymouth as it happens, and have

also filmed us meeting a family in Cornwall. My personal hope is

that once the programme goes out, parents will be asking for the diet

and hospitals are going to have to start to take notice and offer

it. Also we'll be asking for donations and hopefully will raise

enough possibly to fund another dietician at Great Ormond Street???

The timing against the football is a real shame, but I am going to

phone as many hospitals and doctors' surgeries as I can on Monday and

try to get as many medical professionals as possible to watch it.

I've got the Portland in London covered already, as well as my own

GP.

I have created an A4 page about Francesca and the programme which I'd

happily e-mail to you or anyone else who is interested. You must

phone your neuro and tell them to watch (or tape it if they can't

bear to miss the football!) We need to get as many people watching

this programme as possible.

Anyway, I really hope you will get a chance to do the diet in the not

too distant future.

Take care

, Mum to Francesca, Keto Kid since Sept 03, med free for 5 weeks

and jerks getting less and less

> Hi, my name is Nicola Jeffery I live in Plymouth [uK] with my

husband, Keven and 7 year old daughter called Isobel. Isobel has a

currently unspecified epilepsy syndrome that has caused learning

difficulties, autism, motor control problems and uncontrolled

seizures despite trying loads of drug combinations. She's currently

on three AEDs and still no help. She has tonic clonic seizures while

asleep every day, absences, complex partials and atonic seizures

throughout the day. She has never been seizure free. So her

neurologists have suggested the ketogenic diet, which will be very

difficult because of her autism, but we are keen to try it. We have a

big problem however in that no hospitals in the South West of England

can help us and we are told that the trial at GOS in London is now

full.

> My first question to everyone is: Is there anywhere we can go in

the UK to be able to go on the ketogenic diet? We will travel

anywhere.

>

> Thanks for listening.

>

> Nicky

>

>

>

[Guest guest]

Dear Nicola,

I'm afraid I don't have the parent's name or e-mail address to hand, but I was

in touch with a father who's son was treated in Cambridge, at a hospital, by

a part-time dietician. I sure hope either he reads your e-mail or I

find/remember his name or addy. I guess you could try reading in the

community/group area for any details this parent might have contributed on the

hospital's program,

Best wishes,

Phil (Malvern, UK)

finding a hospital that can help us

Hi, my name is Nicola Jeffery I live in Plymouth [uK] with my husband, Keven

and 7 year old daughter called Isobel. Isobel has a currently unspecified

epilepsy syndrome that has caused learning difficulties, autism, motor control

problems and uncontrolled seizures despite trying loads of drug combinations.

She's currently on three AEDs and still no help. She has tonic clonic seizures

while asleep every day, absences, complex partials and atonic seizures

throughout the day. She has never been seizure free. So her neurologists have

suggested the ketogenic diet, which will be very difficult because of her

autism, but we are keen to try it. We have a big problem however in that no

hospitals in the South West of England can help us and we are told that the

trial at GOS in London is now full.

My first question to everyone is: Is there anywhere we can go in the UK to be

able to go on the ketogenic diet? We will travel anywhere.

Thanks for listening.

Nicky

[Guest guest]

Hi Nicola,

We did the Ketogenic Diet at the Central Middlesex Hospital under Dr.

Ruby Schwartz.

At the time we did it we had no dietician but managed with help from

this group. This dr.

is involved with the ketogenic trials that are going on.

If you don't mind travelling you could try there.

Saro ...Rohan's mum

nicola jeffery wrote:

> Hi, my name is Nicola Jeffery I live in Plymouth [uK] with my husband,

> Keven and 7 year old daughter called Isobel. Isobel has a currently

> unspecified epilepsy syndrome that has caused learning difficulties,

> autism, motor control problems and uncontrolled seizures despite

> trying loads of drug combinations. She's currently on three AEDs and

> still no help. She has tonic clonic seizures while asleep every day,

> absences, complex partials and atonic seizures throughout the day. She

> has never been seizure free. So her neurologists have suggested the

> ketogenic diet, which will be very difficult because of her autism,

> but we are keen to try it. We have a big problem however in that no

> hospitals in the South West of England can help us and we are told

> that the trial at GOS in London is now full.

> My first question to everyone is: Is there anywhere we can go in the

> UK to be able to go on the ketogenic diet? We will travel anywhere.

>

> Thanks for listening.

>

> Nicky

>

>

>