RE: Help Please from UK members

[Guest guest]

Dear ,

I live in Worcestershire and treated at The Queen Hosp.

Birmingham, I'm trying to find out what hospitals in the UK are

offering treatment for epilepsy by The Ketogenic Diet.

May I ask, which hospital is your son, , being treated

at ?

Best wishes,

Phil

> Hello

>

> We're new to this site and live in the UK.

>

> We will be starting the diet soon for our son but will be

> working through an inexperienced team.

>

> We would be pleased to hear from any experienced parents in the UK

> who can help us on issues which are local to the UK (special

> suppliers of items, any UK specific pitfalls etc.)

>

> Looking forward to hearing from you.

>

>

[Guest guest]

Hi ,

I'm not sure if I count as experienced yet, but I've learned an awful

lot since Francesca has been on the diet, which is since the end of

September. It's going well for her - myoclonic seizures have reduced

to around a quarter of what they were. We're now starting to wean

her off Epilim, so will soon see if it's having an effect on the

tonic clonics??? Fingers crossed.

Anyway, I have certainly found products that work, for example

drinks - Tesco do some still flavoured waters that Francesca loves

(raspberry, cranberry, apple etc), and the Tesco Value squashes are

also fine.

If you want meal ideas, I'm also pretty creative, and using the

Stanford Meal Planner, which I have wiped of US values and replaced

with UK values, think the sky's the limit. Last week, I made

Francesca a Chocolate Souffle omelette with raspberries and linseed -

flash huh!!! OK, that's an exception, but I do have lots of ideas of

which foods to use that are the lowest in carboydrate and the highest

in fibre to try and alleviate the almost inevitable constipation.

That's actually the biggest problem for Francesca, but it has been

for a number of years in fact, and with the help of this group, I'm

determined to crack it!

Assuming your dietician gives you the generic vegetable groups, which

you can then use to choose from, I personally would ask her to

include some berry fruits, as it does give a lot more flexibility to

create a pudding. I often give Francesca cranberries, just

microwaved with a Hermecetas tablet and a little water and she's

quite happy - they're high in fibre too. Others worth using are

raspberries, redcurrants, blackcurrants and blackberries. I keep a

pack of raspberries and cranberries in the freezer all the time - oh

and rhubarb of course - again stewed with a Hermecetas tablet.

Personally I would ditch most fruits - it seems harsh, but they're

mostly so high in carbohydrate, it's not worth 'wasting' the carb

count. Francesca used to have fruit after every single meal and she

honestly doesn't miss it, so long as she has something for puddding.

The other great pudding is Rowntrees sugar free jelly made with

Calogen (which is just fat and water - looks like skimmed milk).

Anyway, don't want to rant on for hours, but you are definitely in

the right place - there are many parents here with an absolute wealth

of experience.

Good luck

, Mum to Francesca, 6

PS The programme called Tonight with Trevor Mc is following us

and another family on the diet, to be shown I imagine in a few months

time, which will hopefully put the diet in the spotlight. I

personally find it crazy that you have to have failed so many drugs

and have pretty much uncontrollable epilepsy before you are

considered for the diet in the UK. I sincerely question how

different a child Francesca might be, if she hadn't tried the

cocktails of drugs she has. Why can't people try the diet as a first

choice if they want to???

> Hello

>

> We're new to this site and live in the UK.

>

> We will be starting the diet soon for our son but will be

> working through an inexperienced team.

>

> We would be pleased to hear from any experienced parents in the UK

> who can help us on issues which are local to the UK (special

> suppliers of items, any UK specific pitfalls etc.)

>

> Looking forward to hearing from you.

>

>

[Guest guest]

Ginny,

This is a great update! I’m so glad to hear things are going fairly well.

Congratulations on weaning all meds!

Rhonda (mom to Shan)

* Hi

We began the diet in the UK (now living in the Middle East). We did ours

through Poole (our local hospital) which was the first time for them, I

believe, although our daughter had been to Gt Ormond St where they had

recommended she try the diet. (Our local paediatrician and dietician did

refer to GOSH for certain things and direct to the drug manufacturers.)

During the week we spent in hospital we found it the most difficult time, as

a lot of the meals used a type of peanut oil to make up the fat content,

which our daughter HATED! It wasn't until we came out of hospital and I

could try experimenting with foods to find meals that our daughter would

eat. (We have a set of about 6 now that she eats happily all the time.)

Also, I had to keep a close eye on her food, as despite having a set keto

meal plan, the kitchen did get things wrong (eg adding grated carrot to a

" free " salad).

I bought all sorts of flavourings and colours to make some of the food look

more palatable, which for us was a waste of time. I found plain, unsalted

Macadamia nuts in the home baking section of Sainsburys. (Which were

cheaper than the ones in the nuts and crisps section.) Also, when my

mother was buying Macadamia nuts in bulk for us, she spoke to the manager of

our local Sainsbury's, explained about the diet and got a bulk buy discount!

Rowntrees diabetic jelly was good for a while until our daughter got fed up

of it.

Be warned! All double cream is not the same! Elmlea was actually only 36%

fat compared with Sainsbury and Co-op own label which is 47.5%. You must

read the labels on everything! also, things such as pork sausages, which

were on our diet list: supermarket " value " ones are much higher in

carbohydrate (filler?) than the " normal " ones. Clotted cream was useful,

(something like 63% fat - can't remember as I cannot buy it out here) as we

used it with a tiny amount of porage oats and oil to make porage in the

morning, which my daughter likes.

When we became " brave " we took the whole family out for pub lunches, and I

always told the staff about the diet. We took a set keto meal and asked for

just a plate or for her food to be warmed up in a microwave. No-one ever

refused.

Our daughter has been on the diet for 7 months and has very recently been

weaned from Epilim and Topamax. The diet has made a big difference to her:

much much better than when on medication.

Good luck.

Ginny

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