Re: is at it again!!!!/

[Guest guest]

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 .

> > Hope everybody is okay – sorry I've not been posting recently –

> been

> > on holiday (very wet!) and has now seemed to take another

> > step backwards and I could really use some advice.

> >

> > After the original catabolic problem whereby I increased his

> > calories, it seems that we are now back at that original state –

> his

> > blood readings are back to what they were when this was going on

> even

> > though his calories have been increased substantially. I am now

> > thinking that they may need to be reduced. Would appreciate your

> > thoughts.

> >

> > I weighed on the 9th August and he was 33.6kgs, I weighed

> him

> > again this morning and he was 35.3kgs – which is why I am

thinking

> > that calories may need to be reduced, but on the other hand he

had

> > not put on weight or grown much at all over the past year – so do

> I

> > just ride out this storm?

> >

> > When he was catabolic his ketone readings were 1.3 and glucose

4.8

> > first thing in the morning (that was about 4 weeks ago) – I upped

> his

> > calories and things improved but now they are back to these kind

> of

> > readings and this morning it was glucose 4.7 and ketones 1.8. I

> also

> > did a reading at about midnight last night (he had had valium by

> that

> > time though) his readings were glucose 4.1 and ketones 2.7 which

> is

> > again too low on the ketone front but he had had 3 seizures by

> that

> > time as well.

> >

> > I have had to give him rectal valium (again – that is twice in a

> > week) last night and he is obviously groggy today.

> >

> > The only thing I can think of is that the calories now need

> reducing

> > bit by bit until we get him back on an even keel (which I thought

> we

> > had). He was on 1860 calories and we increased them by 400 (all

> done

> > with his dietician) I am planning to reduce them by 50 cals each

> time

> > until things improve – giving about a week inbetween each drop.

> >

> > He is slightly constipated at the moment as well (in the process

> of

> > getting some senna for that one!) He does seem to be drooling a

> hell

> > of a lot at the moment (possibly cutting the big back teeth) and

> he

> > is rubbing his right eye a lot and normally when he does this

then

> it

> > is followed by seizures and him waking up with weakness on his

> left

> > side. My poor lad can't seem to be able to go to sleep without

> > having seizures now and it is normally about the time that he is

> > going from REM sleep to a deeper sleep – it is like he is having

> > difficulty doing the cross over bit. Once he starts he seems to

> have

> > t/c seizures every half hour. This makes him tired and that

makes

> > him fit more – it is a bloody circle we are going in at the

> moment.

> > He was also very clammy last night and sweaty (which is a miracle

> in

> > itself because does not sweat or cry tears) – he had no

> > temperature so I don't think he is sickening for anything.

> >

> > This is so frustrating – he was doing brilliantly and we were

even

> > reducing the ratio, then we had the catabolic problem and then I

> > seemed to have got that under control and he was getting better

> again

> > (still not as good as he was but better) and now we have gone

> right

> > back to square one again.

> >

> > Anybody got any thoughts/suggestions because I could really use

> them

> > right now.

> >

> > Take care.

> >

> > Emma - Mum to who is really having a hard time at the

> moment!