Re: - weight gain/catabolism/

August 27, 2004

Thanks - you really are a star!

Ok - after several cups of coffee and half a battenburg cake (and I

wonder why I am putting on bloody weight!) I am out of self-pitying

mode and am ready to do battle once again.

I was on the phone this morning at 8.30 - every doctor that deals

with is on holiday!!! His dietician is away and trying to

speak sense to an assistant registrar who wants to admit him and

suggests using phenobarb to stop seizures (over my dead body!) I am

really not going to waste my time with.

Interesting development though - is awake now and obviously

does not want to move and is quite happy lying in bed in the playroom

watching TV next to mum (daytime TV really is c**p but I am too tired

to concentrate on anything else!) He is responsive and is smiling at

me - although how the poor little chap is doing it I have no idea

after the night he has had. He does not want to eat though, and to

be honest, at the moment I am not forcing him with anything.

However, I am back to testing glucose and ketones every few hours,

I tested him about 2 hours after his last seizure this morning the

readings so far are:

7.25am - Ketones 2.5, Glucose 4.4

9.40am - Ketones 3.6, Glucose 4.0

He had no seizures in between these times but it seems that his

ketones are going up and glucose coming down - no meds have been

given to him as yet, but when he has another seizure (and lets face

it, he will) I am going to give him 10mg rectal valium. I am not

going to force him to eat and I am just going to see how he goes

today and see if a pattern is forming - we definitely overshot the

mark with the calories, the weight gain is telling me.

I am going to keep him quiet this weekend and just deal with the

seizures with rectal valium and keep monitoring him as I am doing

now. It's a bank holiday on Monday and all docs are back to work

Tuesday, so I will get hold of them then - there is absolutely no-one

to go to today and certainly no-one that will order a ree dx test for

- I am going to be having a battle for that one in any event

anyway - but hopefully if we can maybe start the ball rolling for

these tests in the UK with then at least I will be able to

post it on s Friends and through his experiences it will help

other children get these tests if possible.

Thanks for your time - How are you anyway - getting better

hopefully.

Take Care

Emma. - Knacked mum to a very knacked !

> It really is all happening at once there isn't it

> Deep breath - save most of the nasty ex hubby thoughts later on

(sounds like he deserves a fair few of 'em..ugh) and muster the aggro

instead towards his pathetic attitude for your 8.30 am phone call for

the ree dx request/demand. It is not a scan btw for when you ask for

it...it is just called a ree dx 'test' (resting energy expediture).

The scan wording comes in for the dexa scan, the other one used after

being catabolic, which is like an xray that will tell you what state

his fat/muscle (body composition) is in. That one will not help cal

wise at this point now though, so is not as urgent, it will be needed

more once this storm settles.

> I would save any decision making diet wise till you know if the

ree dx is gonna happen - otherwise any changes you are considering

may have to be undone depending on what shows.

> 's bad seizures came only in sleep too during all this,

basically because his control was so tenuous that they raised their

ugly heads when he was more susceptible - ie - asleep. Nightmarish

though those nights were - (it is a pretty lonely place at night

during this crap, I know, and that was even with a hubby there to

share the load....don't honestly know how the hell you are even doing

this!!!) at least it IS contained to night only, which is something

to be thankful for - probably doesn't feel like it right now after

the kind of night you have just spent, but it is....

> Which yes - brings you to your next dilemma of whether to try

stamping on it with the benzos that can do more harm than good

because of the sleep cycle disruptions they can cause. However - this

risk has to be weighed against the risk of NOT intervening and

allowing the cycle to get more and more out of hand, potentially

culminating in daytime seizure activity too - clearly what you don't

want or need right now.

> How long are the ones that came every hour last night lasting? If

prolonged, like cluster types rather than 'one off's', I think I

personally would probably intervene if tonight repeats with that

pattern. One an hr would not officially be termed convulsive status

if he is recovering in between, but it is getting a bit close for

comfort

> probably more so than clobazam in my opinion, quicker acting

with a longer half life, so less risk of rebound seizures as the dose

wears off. But you know Matthw better than anyone of course, so you

know which med if any it is likely he would respond better to. If you

are now on the right track cal/diet wise, (and I know it is a big if

till you can hopefully get it confirmed thru testing...) then he may

be at the point where he does indeed need a med intervention to

hopefully calm things down, break the cycle, and allow him to start

over.

> If you do go down this road, he may need consecutive doses to

keep on top of it, perhaps even 4 hrly, whether or not it works

initally. Stops the Beast having the chance to rise back up

again...If you see any adverse reaction from using it, like even more

seizures in sleep, or so much sedation hangover the next day that he

seizes when awake as well, you will know not to try it again.

> I am up and about for the next few hrs, will keep an eye out for

any updates or questions, or just for an 'ear'

> Won't be on this pute though, so may miss any direct emails, so

I'll check either here on keto, or on suric-pacific@x... ('s

laptop I will have upstairs with me).

> Good luck Emma, you're not alone, and no way should you ever

apologise for sounding off - you are facing a huge battle right now,

pretty admirably too from where I sit

>

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

> From: ketomum68

>

> It is 4.20am in the UK at the moment and I have had to watch my

boy

> fit every half hour from about 10.30pm last night and right now

I am

> gripped with this panic that for some reason this diet may have

> stopped working for him and there is nothing left for us to

try. I

> know I am probably being totally irrational and over the top at

the

> moment (tiredness not helping here folks) but I don't know what

else

> to do right now and I'm afraid that I am having to 'unload' to

you

> guys.

>

> I read the Freeman section on the calories and I thought

about

> fasting him for 24 hours. To be quite honest, I don't know what

to do

> for the best right now. Options I am thinking through at the

moment

> are:

>

> 1. Put him back to the calories he was on before this kicked

off

> i.e. 1860 with a 100 cal increase and using LCT oils instead of

MCT

> oils (which have fewer calories in them). This hopefully

slowing any

> weight gain down and maybe him losing some of the rapid weight

he has

> put on over the past 2 weeks.

>

> 2. Fast him for 24 hours and see how his ketones are doing etc

re:

> Freeman book.

>

> 3. Possibly look at reducing his ratio - he was doing well on

a

> lower ratio before this lot kicked off (with increased MCT oil).

>

> Every time goes to sleep he is fitting - he is not

fitting

> when he is awake though - the panic that is gripping me is that

if he

> is catabolic and we are having all these problems with calories

etc,

> etc - then why isn't he fitting all the time (desperately NOT

trying

> to tempt fate here). I know normally only has

nocturnal

> seizures anyway, but when he is sickening for something then he

will

> have seizures at any time not just when asleep.

>

> I have been riding the storm tonight and have NOT given him any

> valium. I don't know whether this is the right thing or not -

last

> night I gave him 10mg Clobazam and he still had 7 seizures and

> couldn't walk this morning. Maybe I should give him the

valium, but

> I keep hoping that he will make that 'cross-over' in his sleep

and

> finally get some good quality rest, but if I give him the

valium then

> I am keeping him in a more vulnerable state for seizures. I

am

> sleeping downstairs with him at the moment because that way I

don't

> break my back trying to carry him downstairs in the morning.

>

> This was the weekend that Matt was supposed to go to respite as

well

> (this will be the second one I am cancelling) as I was going to

have

> some time with Alice (my 8 year old) - she is great by saying

she

> doesn't mind - she is a special kid in her own right - but

doesn't

> stop me feeling like the worst mummy in the world!! To cap it

all

> this week his father (spineless a***hole) is not going to see

> anymore because he is 'too big and I can't cope with him

anymore' he

> says, obviously has nothing to do with the fact that he now has

a new

> son whom is just about 3 months old!!! Is it me or is this a

bit of a

> coincidence!!!! Sorry people, you don't need to hear all this

but I

> am just in dire need of a sound off because the world is

feeling like

> a pretty lonely place right now (wallowing in self pity at the

> moment - will snap out of it very soon I promise!)

>

> Immediate plans for 8.30am this morning is to phone his local

> consultant, track the bas***d down, dump in his lap and

> demand a ree dx scan (I think tired, panic stricken, over

protective

> mummy that is 6ft tall and pi***d off should put the wind up

him

> enough). I am also going to phone is Consultant at GOSH too

and see

> what she has to say.

>

> Will keep you all posted and any suggestions you guys have will

be

> most welcome - right now I am tired, emotional and you lot will

have

> to be my sensible head. All I hope is that when I visit our

local

> hospital I will bump into the consultant that first treated

> (he is now at our local hospital here - he's following us!) so

that I

> can get some pent up aggression and frustration out on

battering the

> living daylights out of him!! He was the one that told me that

the

> diet was crap etc, didn't work, difficult to manage etc, etc.

He was

> also the one that put on all the different drugs which caused

more

> seizures and status episodes and nights in intensive care etc,

etc.

> as 2 when I first asked for the diet - took me 6 years

to get

> him on it.

>

> Sorry for the whinge guys, but I don't know what to do for the

best

> right now.

>

> Take Care and thanks.

>

> Emma - Mum to who is really have a bad time.

>

August 27, 2004

Emma,

I understand so well what you are passing through....it's always like that for

us to!

Daddies are not very implicated ...aël's one is on holidays with the 3

children of his new girlfriend and we are alone here....I don't want to think

about it, I try to manage by myself like usual!

I give aël valium intra rectal nearly every night again be cause I

lowererd the ratio to 2.1 because of the acidosis but the trouble is that

seizures are more intensive!

What a dilemma!

Here no doctor either, no possibility to contact them, too busy!!!

Take care and try to keep courage...

All my best

Carolyn, aël's mum