is at it again!!!!

[Guest guest]

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!