Re: /ree dx/carnitine -

[Guest guest]

Hi ,

No I don't have the paper - would love to have it though! Any ammo I

can use would be gratefully received!

Have a good evening - I could kill for an evening down the pub at the

moment!!!

Take Care and thanks.

Emma. Mum to .

> Do you have the paper from Hopkins (summary of a workshop I

thnk?) where

> the use of a ree dx is mentioned to help assess keto cal needs? If

you dont,

> I'll try and find it and send it through to you - should make for

good

> 'ammo' to push for an urgent one. I think in it said they found a

pretty

> large gap between what had been assessed based on their table and

what was

> actually showing up in the ree dx's.

> It will have to be in my morning though, hope that's ok - er,

believe it

> or not, I am heading out the door again - pub night and is

tapping

> his foot cos I am late .....

>

>

>

> Re: /ree dx/carnitine !!!!!!!

>

>

> > Hi ,

> >

> > We have the capability to do ree dx tests in our local

hospital -

> > but 'there is no money in the budget' for to have

one!! They

> > don't use them for that. - This about sums up our NHS service

at the

> > moment - I have spoken to my doctor about getting one - but his

name

> > would have to go on a waiting list as it is not classed as a

priority

> > (apparently!) I am going to have another crack at the

consultant

> > tomorrow!!!

> >

> > was quiet yesterday but perked up in the afternoon - his

> > meals were a bit slow getting down him but we eventually got

there

> > (his co-ordination was a bit shot - bloody drugs!) anyway, I

tested

> > his bloods at 10pm and his glucose levels were 3.7 and his

ketones

> > were 5.2 (Yippee!) That is the highest reading of ketones that

we

> > have had in ages although my joy was short-lived because at

10.30pm

> > he had a t/c - What is going on?! He had a good high rate of

ketones

> > AND bloody 10mg of bloody clobazam. I have to say the time now

is

> > 7.10am and he is still sleeping and so far no seizures (that's

it,

> > I've torn it - within 10 minutes he will be going for it).

> >

> > I did his bloods again this morning at 6.10am and his glucose

was 4.2

> > and his ketones were 0.8!!!! Mind you I have to say, I don't

know how

> > accurate those figures are because he really did not want to

bleed

> > this morning (God, that sounds awful doesn't it!) - I did have

to

> > squeeze his fingers a bit. My boy has awful circulation and

even

> > though he has been under covers for the night and it is warm

over

> > here, his hands and feet are quite chilly.

> >

> > Anyway, the other thing I have been looking into is carnitine -

I

> > know that some of you guys use supplements so I did a bit of

research

> > and think that could also be lacking in this -

especially as

> > I had been moving him more towards an MCT and his dairy and red

meat

> > had cut down to very little. I think that likes and is

> > better suited to the classical - his body has become used to

it, so

> > it is back to cream, butter, cheese, beef and lamb for us!

> >

> > I am speaking to his dietician tomorrow - I am going to have a

chat

> > with her about cutting his calories a bit. I will see how he

goes

> > today.

> >

> > Take Care

> >

> > Emma. Mum to - (SO FAR) having a good nights sleep!

> >