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]

Nicky,

While you are searching you could try placing Isobel on the Atkins diet.

Rhonda

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]

Nicky,

While you are searching you could try placing Isobel on the Atkins diet.

Rhonda

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

>

>

>

[Guest guest]

We're doing it under Alder Hey children's hospital in Liverpool.

Our dietician isn't THAT familiar with the diet, but as I'd done

lots of research in advance I didn't need a huge amount of support.

W're doing the MCT oil version, which apparrently doesn't have as

good a success rate as the diet only version, but I wouldn't swap

it - can even go to Mc's on this diet - ok not the

most healthy of foods, but it's nice for him to be able to eat with

his peers, even tho it is with limited calories! As for the success

rate, well hasn't had a fit whilst awake this year, and his

night time ones are more like sneezes than " proper " fits - We're

happy on it anyway!!

I know Liverpool is quite a way away from you, but we've not needed

a lot of face-to-face contact (lots of phone support tho!) after the

first 5 day stay in hospital.

If you want contact info for Alder Hey, then feel free to email me

directly.

Gail Hall

[Guest guest]

We're doing it under Alder Hey children's hospital in Liverpool.

Our dietician isn't THAT familiar with the diet, but as I'd done

lots of research in advance I didn't need a huge amount of support.

W're doing the MCT oil version, which apparrently doesn't have as

good a success rate as the diet only version, but I wouldn't swap

it - can even go to Mc's on this diet - ok not the

most healthy of foods, but it's nice for him to be able to eat with

his peers, even tho it is with limited calories! As for the success

rate, well hasn't had a fit whilst awake this year, and his

night time ones are more like sneezes than " proper " fits - We're

happy on it anyway!!

I know Liverpool is quite a way away from you, but we've not needed

a lot of face-to-face contact (lots of phone support tho!) after the

first 5 day stay in hospital.

If you want contact info for Alder Hey, then feel free to email me

directly.

Gail Hall

[Guest guest]

Dear Nicky,

Thanks for your message, we have had a battle all round with getting

help for Izzie in Plymouth. Always told 'lack of resources' etc.

Anyway, I really appreciate your suggestions and will press her paed

to speal to GOSH to see if they will help us.

In the meantime we are going to try Atkins ... which will not be a

breeze becuase Izzie, being on the autistic spectrum is a tad

obsessive about her eating habits.

If you have any particular tips, I'd be grateful.

regards

Nicky

[Guest guest]

Hi Nicky,

Matt is on the autistic spectrum disorder scale, whatever that means!Just

persist, it is really hard, 8 mths later , Matt is still not keen on the diet

but he knows we are going to get it into him and they do adapt.Matt does not

even complain at birthday parties when he can't have the food or cake, he did

at the beginning,

Nicola

[Guest guest]

's allowed 450 cals pf " normal food " as well as his MCT oil

mix. These are calculated as exchanges of 50 cals i.e. 9 exchanges -

4 protein, 5 non protein. At McD's he can have 1 1/2 fish fingers

and half a dozen fries, with a diet coke for 3 exchanges - we don't

do it often, but it's nice to be able to occasionally! He can also

have 14g of Cheerios and 70 ml milk for breakfast, so it's a much

more manageable diet.

Gail

P.S. Thoroughly enjoyed Tonight with Trevor McD - my hubby actually

watched it instead of the England game (up to 8.25 when we heard

next door cheering!!) It is SO close to home - the last bit about

being out of it and unteachable - it SO could've been MY

son !

> Gail,

> how did you get Mcs into the diet?We are also on the MCT

version,

> dairy free, off all drugs now.

> I saw practice at Alder Hey Vets and used to live in Liverpool.Now

in the SW

> Nicola, mum to Matt, keto kid since Sept 2003, at GOSH

>

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