Re: - weight gain/catabolism/Lorene

[Guest guest]

Hi Lorene,

Sorry I have not replied to you sooner - I meant to and then got side

tracked etc, etc - as you will see I am having great fun and games

here at the moment!

Thank you for your support - it is very welcome and I do appreciate

it.

I have set up a UK charity called s Friends and our website

address is www.matthewsfriends.org - if you go to the site you will

be able to read s story and what the charity is hoping to

achieve here in the UK and in Europe. It would be great if you would

like to join the forum and share your experiences and advice with

other UK parents - there is so much work to do in this country to get

the diet managed properly and get it AVAILABLE in the first place!

Some of our friends from overseas on this site have joined us as well

and pop in to the forum and share their advice with us as well.

Thanks again for your support and I hope all is well with you.

Take Care

Emma - Mum to .

> > > How is he doing now Emma? Careful how quickly you drop those

> > cals, you don't want to tip him back the other way, this is where

the

> > dieticians are the best to advise - but I know the feeling - mine

is

> > away right now too

> > > Pg 93 of Freeman's book is probably the best info he offers

on

> > this one - 'as few as 100 cals too many per day can upset

ketosis, in

> > smaller infants even 25 cals per day may be critical'.......'we

will

> > at times test the system in the child with low ketones by fasting

the

> > child for 24 hrs. If the ketones rise after this fast then we

will

> > decrease cals.....'at an excess of 100 cals per day it takes an

> > entire month before any weight gain is seen'

> > > Pg 123....'children should be weighed every week...over the

> > longer term children should gain weight in proportion to their

growth

> > in height. Children should be measured every 3 mths in their

> > physician's office, their height and weight plotted on a growth

> > chart, and calories should be adjusted to keep weight

proportional to

> > growth'

> > >

> > > However....all this is well and good (the latter part more as

a

> > preventative measure) if there hasn't been a state of catabolism

> > previously, and nowhere is this touched upon in the book. Perhaps

it

> > was high time it WAS included, cos it is very complicated as to

what

> > happens' next' after a period of malnourishment. Weight wise,

growth

> > wise, and metabolism wise.

> > > The 90 min clockwork thing you are seeing is probably as he

> > changes with seizure susceptibilty to sleep patterns - not that

it is

> > much help knowing why, I know you just want the damn things gone

> > fullstop...

> > > How long does this crap last you ask? Well, how long's that

damn

> > piece of string basically

> > > As you know had a second period of being catabolic 6

mths

> > after his first introduction to that particular nasty...but the

> > initial cal increase seemed to settle him for a lot longer than

you

> > have seen with , so I am guessing that 's calorie

> > increase at the time was a lot more in line with what his body

needed

> > than 's recent cal hike was. BUT - that was probably due

to

> > the fact we weren't guessing like you have had to - we had the

> > benefit of the ree dx test to work with. See how important I

think it

> > is as a finetuning tool, especially when the situation has gone

to an

> > extreme such as catabolism?

> > > If what you have tried this time doesn't work Emma, I think

you

> > may have to get your demanding hat on - I know you already have

it

> > and use it a lot - but this to me seems critical - there is a

machine

> > available, you have to shout and scream and stress the importance

of

> > it being used here and now to get back on track I think?

> > > Our dietician somehow approved 's, I don't even think

our

> > neuro team knew what the machine was for.....can you go up

another

> > hospital funding path to get one done? If no joy, straight to the

> > top - ie - management where the budget strings are pulled?

> > > You have the paper from Hopkins on the use of calometry

(sp?),

> > ie - ree dx to set calories as being a step in the right

direction

> > accuracy wise to arm yourself with?

> > > Back it up by using the argument that if you dont get this

cal

> > issue sorted out, the cost to the health system overall will be a

> > helluva lot higher if you have to start back down the road of

using

> > hospital admissions/resources and drugs on a regular basis - they

are

> > costly, very costly - whereas preventative measures here and now

(to

> > stop this cycle escalating too much further) could save them a

> > ****load of money if they think about it logically and using

their

> > business/financial heads. Yes?

> > >

> > >

> > >

> > >

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

> > > From: ketomum68

> > >

> > >

> > > His dietician is away at the moment and I was going

to 'play it

> > safe'

> > > and reduce by 50 but I have reduced by 100 today as he was

so

> > groggy.

> > >

> > > I have given him meds this evening (10mg clobazam) but he

has

> > already

> > > had 1 t/c so far. I am going to wait until about 2am to

do

> > > bloods/ketones etc because he has either just eaten or just

had

> > a fit

> > > and it will mess up the readings! His urine ketones were 8

> > tonight

> > > which is usually good for . I just hope he has a

better

> > night

> > > tonight than he has had.

> > >

> > > If he is still going for it tonight and not good tomorrow

then

> > I am

> > > going to reduce again - let's face it - he is fitting at

the

> > moment

> > > anyway and I am really concerned that he has put on nearly

2kgs

> > in

> > > about 3 weeks - not good.

> > >

> > > How long does this crap last - it's doing my head in and I

HATE

> > the

> > > fact that I have had to give him clobazam tonight but he is

> > back in

> > > the pattern of everytime he goes to sleep he starts to fit

and

> > it is

> > > nearly ALWAYS about 90 minutes - 2 hours after he goes to

> > sleep, I

> > > can practically set my watch by him.

> > >

> > > Anyway, enough of my moaning. Let me know how things are

with

> > you

> > > and you take care.

> > >

> > > Much love,

> > > Emma. x Mum to .

> > >

> > >

> > >

> > >

> > >

> > >

> > >