Re: Re: WENDY !

[Guest guest]

In July when the diet was mentioned (in a round about way) his ep nurse said

that Matt would prbably have an ng tube or gastostamy 'cause he can refuse to

eat etc.

Thanks in a way nervous about thursday but i'm ready for her !!!!

Deb x

mmc@... wrote:

The classic diet is often done without solid foods for kids who are tube

fed, there is a keto formula or a way of making your own. I know some

people feel differently, but from my experience on this board, I believe

the classic has a better success rate than than the MCT version.

Hang in, you will get there. I well remmeber the extremely frustrating

wait while trying to get Jess on the diet, including leaving a message

on neuro nurse voice mail that 95% of the time I loved the children's

hosp, the other 5% I wanted to bomb the place and this was one of those

times (she hadn't been returning phone calls). Geuss what, she called

back within 15 minutes LOL

R CROSSLAND wrote:

> Thanks for your support - i feel like no-one understands me and when

> i tell my friends they are all still in denial about Matt !

> With the classic diet (this is 'cause i don't know !) he doesn't eat

> 'food' just 7 months jar food will it be still easy to do ?As far as i

> can tell he won't eat much that i've seen on menus (hope this is

> making sense to you). He also is very hard to get fluids into and

> sometimes food if he adoesn't want it he won't its hard though because

> he is 2 but developmentally he is a 3month old. He also won't drink

> milk and i have trie1d flavoured milk he went of milk (to drink) when

> he 9 months old ! he has milk on weetabix and thats it.

> (Hope i'm not going on but i really don't now much as the ep nurse

> was supposed to send the info out but she has decided its better to

> wait and she'll bring it with her next week). I have tried all sorts

> to get him onto solids he just flat kdown refuses ! (takes after me

> for being stubborn) !

> This really is all that left as i've said before hes exhausted the

> meds which his neuro suggested so i hope she doesn't make me feel well

> i can't think of a word ! Crap !

> Hope i have ranted on again

> Your help was and is greatly appreciated - thanks

> Deb x

>

> wendymmw wendymw@...> wrote:

> Hi Deb

>

> Hang in there - I know it's hard, but I hope you'll get on to the

> diet at GOSH.

>

> Your epilepsy nurse is right in the sense that you won't have a

> choice about which diet Matt goes on to, as they are currently

> running trials of the classical and the MCT diet at GOSH. However,

> she is wrong that it is your neuro's recommendation. If you are

> accepted, the COMPUTER will randomise you to one or the other diet

> and whether you start straight away or after three months. This is

> because they are running it as a trial to ascertain which of the two

> diets is more successful.

>

> By the way, I think when you are talking about the liquid diet, you

> may be referring to Liquigen, which is the SHS MCT emulsion used on

> the MCT diet. It's a white liquid which you can use in recipes.

>

> I really wouldn't worry about which diet Matt would go on to - both

> are used successfully for babies, in fact the Classical diet can use

> Ketocal which is a 4:1 ratio powder used to make up formula

> bottles/milkshakes. As he weans onto solids, you can use pureed

> vegetables with healthy oils/butter/double cream or whatever fat

> source you choose.

>

> Anyway, stay calm, be positive and get yourself onto the diet. The

> team at GOSH are fantastic and support will be there for you. I

> can't remember if you know about www.matthewsfriends.org - if not,

> check it out - Emma has set up a charity in the UK to raise

> awareness of the diet and will be there to help you if she can.

>

> Take care

>

> , Mum to Francesca, Keto Kid for a whole year now (randomised

> onto the classical diet after a 3 month wait originally), drug free

> since May 04

>

>

> > Don't post much as Matts not on the diet but do read posts with

> great interest but ..............

> >

> >

> >

> > Sorry to everyone in advance but ......

> > Rant ... Rang Matts ep nurse toady because for the first time in

> 14 months Matt had to have diazepam through the night, he's had a

> bad day with lots of sz's so by 5.30am came i was shattered ! I rang

> her because she is coming out next thursday to talk about the diet

> and i thought (silly me) if i rang and said yes we want to go ahead

> with the diet it may start the ball rolling ! She rang me back this

> afternoon and said i have alot of literature for you to read and its

> not up to you (i never said it were) which trial diet he would go

> on , either the liquid or classic it was his neuro and so i said he

> wanted Matt on the liquid one as it would be alot easier for Matt

> then she said its not up to his neuro its up to GOSH which i can

> understand but surely they would take into consideration his neuros

> recommendation, his age (he won't eat normal food just 7 month old

> baby jars) and what we want !

> > Then she said i've spoke to Dr Rittey (his neuro) and she said

> i've told him this (surely a neuro knows better then her !!!)

> > And she then said (sorry its long if you've got this far !!!) this

> is very difficult to do and i will come down with you (god i hope

> not!) As i would couldn't cope ! She said i've also told the

> dietitians here about Matt but i said i don't want him to do it up

> here her reply was well i've told them now ! (if you could have seen

> my face)She said anyway it will take months to do there but probably

> even longer up here so we'll have to talk about what meds to do

> next !!!!! Thick cow there isn't any thats why we are going to do

> the diet !!! I've told Rob to take next thursday am off so he can be

> here ads i'd get really upset on my own !!!!

> > Sorry if i've ranted on i'll let you go now and thanks for

> listening if you've read it all from a very p####d off Deb xxx

> >

> >

> >

> >