Re: Re:VERY TICKED OFF TODAY WITH MATTS EP NURSE ! / WENDY !

[Guest guest]

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

>

>

>

>

[Guest guest]

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

> >

> >

> >

> >