Re: low carb drinks/Nicky & Izzie/Atkins

[Guest guest]

Hi Nicky,

Adding on from 's message - yes, the Safeways (they will

probably be changing over the ons soon - need to check values

again when they do!) own brand of flavoured still/sparkling water is

good - again just check the values - most of them are fine showing

either trace of carbs or 0.1/0.2 (which is the same as the value

squash from Tesco).

There are other ways of preparing Izzie for a ketogenic diet as well

(check matthewsfriends.org site for this)- also, if you have not

already done so, can you fill out the questionnaire form on the site

(I have loads coming in) - this will greatly aid the information I

need to get in order for the topic of support to be addressed and

something to be done about it.

I can fully understand you wanting to put Izzie on the Atkins as you

can't get Keto diet (I would probably want to do the same in your

position) - but I would advise that you talk to your paed about what

you are doing first. Also, have a chat to Hopkins (there are links

to them via mattsfriends as well) - they may be able to give you more

information about taking this course of action BEFORE you actually do

it. I know there are some trials going on in the States using this

as an 'alternative' to the full keto diet - but it is early days with

this. If anyone the other side of the pond can give me any more

information on these trials then I would love to hear from you!

Great Ormond Street Hosp are against using the Atkins 'off your own

back' at the moment - but then again, they are not the ones who are

dealing with a child that won't stop seizing and the heartache that

goes with that. I am not against this course of action - I would

just advise caution and find out as much info on this as you can

BEFORE you actually do it. My concern is that if Izzie goes on the

Atkins and there is some problem with excess ketosis or interference

with the diet and her drugs etc, etc, that if you don't have any

support for the Ketogenic Diet - you won't have any for the Atkins

diet either.

Hopkins will know far more about all this than anyone in this country

will - so I would really advise having a chat with them. If you can

get good advice from anywhere, it will be there.

Please don't think I am trying to deter you - I know you will have

massive support on this site and on s Friends - but if it

comes to anything medical needing to be looked at, I don't want you

to be 'on your own'.

Have a chat with Hopkins and see what they say - let me know how it

goes.

Good Luck

Emma .

> Hi

>

> We're considering putting Izzie on the Atkins diet as we can't get

> the medical support needed to do the Keto diet. In preparation I've

> only offered her water to drink [she loves orange squash]. She's

> refusing to drink and I'm having to syringe water into her to stop

> her getting dehydrated. Are there any low carb drinks that she can

> have?

> She's having so many seizures at the moment, is on 3 AEDs [epilim,

> keppra and clobazam] so we're desperate to at least try Atkins

until

> we can find a centre that can help us.

>

> Thanks

>

> Nicky

[Guest guest]

Hi

Thanks for all the support and advice. I've visited the matthews

friends site [which is fantastic] and read the bit about preparing

for doing the Keto diet, we've pretty much done a lot of the things

suggested, Izzie goes to special school and they are very supportive

and understanding ... her teacher and TA both watched the programme

last Monday and were very impressed, ... I think they feel as

desperate as we do to try to help her.

I've tried a sort of 'Atkins day' today and it went very well, Izzie

had 16g of carbs and has enjoyed the food I prepared for her.

I will speak to her paed before putting her on the Atkins diet but

wonder what are the problems with over ketosis? Izzie does have

fairly frequent tonic clonic and nonconvulsive status, could it

trigger this? She also has abnormal kidney function in her right

kidney, could this be affected? Also lately, following a minor op

where we discovered that midazolam stops her breathing, Izzie's

seizures have been dreadful and she is regressing, she's lost motor

and cognitive ability - is a 'bad' time a good time to start

changing diet?

I'd be grateful for your thoughts.

Thanks and best wishes to all

Nicky