Re: Leeanne/UK

[Guest guest]

Hello,

Sorry, I have not posted before, but everytime I get 5 minutes to

post it seems the Yahoo groups are not available - typical!!!

The situation in the UK is not good as far as getting your child on

the diet is concerned, the profile of the diet is VERY slowly

beginning to change due to the trial that is currently going on at

Great Ormond Street, NCYPE and the Central Middlesex but it is going

to take a long time for the diet to be taken more seriously -

unfortunately.

If you have a consultant at Alder Hey that is willing for your child

to try the diet then at least that is a start. It is the dietician

that will be managing the diet that needs to know his/her stuff.

I am the mum that has started s Friends (which both Nicky and

have already mentioned) - whatever support we can give you,

just shout. If you go onto the site then I would appreciate you

filling in one of the parent questionnaires - there have been a lot

coming in and they all help towards presenting a case that this diet

IS in demand and more funding needs to be made available for

dieticians to administer the diet. These questionnaires are going to

prove invaluable when I go to the KetoPAG meetings (Ketogenic Diet

Paediatric Advisory Group). There is a big conference coming up in

November for health professionals where consultants/dieticians from

all over the UK and Europe will attend. As the parent representative

on this group, this is where I will get the chance to voice the

concerns/problems that have been raised by parents. I intend to post

the presentation I make up on the s Friends site when it has

been done for all to read.

s Friends will also be holding its first annual conference

next year for parents (I've just had confirmation through of the

venue - dates should be available next week). There will be guest

speakers there and it will be a chance for parents to network and

gather more information - more details are on s Friends site.

I know that none of this helps your situation at the moment, but you

have definitely done the right thing by joining this site - the

support and knowledge is great.

If you have any problems with getting referred, getting started etc,

let me know.

Take Care.

Emma .

Mum to , keto-kid since July 2002, med free for over a year,

recently been reduced to 3.5:1 and we haven't had a seizure since

(just over 2 weeks now - crossing everything and sleeping with a

large plank of wood to make sure I NEVER stop touching it!)

>

Hi

> --Iam in WEST Yorkshire i started the diet about 1 year ago and

Kurt has been a lot better he only has fits when he has a coated

tongue--- Original Message ----- vicky

> From: NickyBW@a...

> To: ketogenic

> Sent: Thursday, July 01, 2004 4:58 PM

> Subject: Leeanne

>

>

> Where are you starting the diet in the UK?

> We are at Great Ormond St.

> Have you seen the website called _www.matthewsfriends.org_

> (http://www.matthewsfriends.org) ,

> that has a lot of keto info too.(run by a keto mum in the UK)

> Nicola(mum to keto kid since Oct 2003)

>

> PS I am on hols for a few days so might be a delay in replying

>

>

>