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

[Guest guest]

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!

> That cal increase may have been too much at once Emma, if the

seizures

> returning in a bad way have coincided with ketones dropping off,

esp a few

> days after the increase - allowing glycogen to store from any

excess...it

> is almost like his body got a good place cal wise, then it started

to be

> overkill? Maybe you need to cut the cal total back a bit? It is a

fine line

> juggling them back to the right cal total if after a catabolic

process, one

> that we probably lucked out on more than anything, but - having

that ree dx

> test available to help us also played a huge part. Are you sure

there is not

> one available? Any other hospitals or centres nearby that use them?

Not in

> keto specifically, I mean just in any of the hospitals fullstop. It

would

> tell you almost immediately if you have overshot the mark or not,

perhaps

> saving him another build up on meds that you are needing to tide

him through

> until you figure his exact cal need out.

> If he was starting to go catabolic, his metabolism will have

slowed down,

> and his body is probably not yet at the stage of recognising what

he needs

> nutritionally, and how it relates to ketone production, if that

makes sense?

> What were his ketones and glucose levels like when these blood

gases were

> done? If ketone production had already started to slow down, it

will have

> reduced acidity.

> I am no expert on the blood gases, I go a bit 'duh' when I get

D's results

> but I think I know enough to see that they are quite different

from

> 's, who is in and out of that compensatory acid/alkaline type

cycle,

> so I don't think this is what is happening to .

> The base excess (B/E) is acidic though, normal range is -2 to +2,

the

> lower down the negatives, the more acidic they are, so that is the

only one

> that is looking acidic to me. Why though, when none of the other

readings

> are very acidic, I am not too sure about...

> If yu can get those ketones back up again, I'm sure you might be

able to

> save yourself from getting stuck back into another benzo cycle, but

I know -

> easier said than done......

>

>

>

>

> ----- Original Message -----

> From: " ketomum68 "

>

> > Hi ,

> >

> > I have no idea what his previous blood gas results were as this

is

> > the first time that I have received them personally - other

times the

> > doctor has just said that they were fine (as they have done this

> > time). See what you think.

> >

> > Capillary Sample Acid/Base 37'C

> >

> > pH 7.413

> > pCO2 4.38 kPa

> > p02 11.09 kPa

> > HC03 -act 20.5 mmol/L

> > HC03 -std 21.9 mmol/L

> > ctC02 21.5 mmol/L

> > BE( -3.1 mmol/L

> > BE(ecf) -4.1 mmol/L

> >

> > Electrolytes:

> >

> > Na+ 143.0 mmol/L

> > Cl- 108 mmol/L

> >

> >

> > I have no idea what I am looking for to tell you the truth - if

you

> > could throw some light on this then I would be grateful.

> >

> > I seem to have lost s ketones totally (registering

0.8!) I

> > gave him 10mg Clobazam last night as the night before he had 7

> > seizures and was like a zombie most of yesterday - so much so

that I

> > could hardly get him to eat or drink (which really helps

matters).

> > He only had 2 seizures in the early hours of this morning but

he is

> > still a bit spaced today although he is brightening up a bit

now. He

> > has eaten more this morning.

> >

> > I decided to go right to the beginning yesterday, and have

basically

> > put him back on a 4:1 ratio with the additional 400 calories

for the

> > time being to try and get ketones up a bit. I have stopped the

lower

> > ratio and ditched the MCT oil - I just really wish I could get

him

> > back on an even keel again. This has been going on for 2 weeks

now

> > and he is not up to going to his summer playscheme or

anything. I

> > hate seeing him like this.

> >

> > It is a vicious circle we seem to be in - he seizes, gets tired,

> > doesn't want to eat, glucose rises, ketones drop and because he

is

> > tired as well, he siezes more - it just keeps going round and I

don't

> > know how to break this bloody cycle. I gave him Clobazam last

night

> > and he did sleep better and only started having seizures at

about

> > 5.30am, he had another at about 6.40am and I got him up after

that

> > and although he is a bit spaced, he hasn't had a t/c since (he

will

> > probably go nuts now that I have said that!) I am going to

keep him

> > on the Clobazam for the next few nights to see if he can rest

better

> > and try and break this cycle - I am just going to have to think

of

> > the meds as being on antibiotics or something like that - I hate

> > having to give him AED's now he has been off them for so long -

at

> > least Clobazam has only been prescribed short term. I will then

wean

> > him off slowly.

> >

> > In the meantime, I have a serious case of cabin fever!

> >

> > Hope all is well with you and (what a cutie!)

> >

> > Take Care

> > Emma. - Mum to who is having a rough old time at the

moment.

[Guest guest]

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!

>