- hospital

[Guest guest]

Hi all, my 'turn' to be home, thanks for all the messages re advice on the resp

distress and those asking after .

may be out of hospital tomorrow, am not sure if I want this or not.

Cognitively, he is 'toast', lurching everywhere, drooling, slurring, you would

swear he was in NCS, but an EEG yesterday says definitely not. It was the same

as one a couple of months ago, the odd spike and wave, more on eye closing, but

overall, one of his best in 2 yrs! I don't get it, if this is not behaviour from

frequent seizure activity, what on earth is it. Love to think it is med

toxicity, that we can eventually 'fix', but I just don't know any more. Really

quite worried that some 'damage' at some stage has occurred over the past couple

of months, or that a progressive decline is happening with him. If the EEG is

the same as the last one, after a few depakote/lamictal withdrawls, it can't be

that this has had an adverse affect on him, or it would show in seizure activity

- wouldn't it???

Is he really getting more toxic with each reduction we do, I just am having such

a hard time with the logics, especially when trying to explain it to 's

neuro, who doesn't feel 's AED levels are at a theraputic level any more,

never mind a toxic level. (Depakote 400 mgs, lamictal 75 mgs, nitrazepam 8.25

mgs)

Have to decide what 'plan' to take to the hospital tomorrow, whether to push for

an extended admission to do a speedier drug reduction, our schedule of

reductions means about 7 more months (at least) to go through. If he were doing

okay, I wouldn't mind, am not 'anti drugs' at all, but he is not showing

consisitent improvement with each reduction, and I'm sort of starting to feel

maybe he was better cognitively pre diet in between (frequent) seizures, than he

is now, where we only really have seizures (except those pesky intermittent

night ones) when doing lamictal reductions, or he becomes really ill.

The other thought we had is that he may have developed ESIS (sleep status), but

even if he has, we wouldn't know if that is because we've reduced his meds, or

because they need reducing, same old, same old.

Anyway, that's where we're at, 's resp issues appear resolved now, so that

wee crisis can hopefully be filed away now....just got to figure this other

business out.

By the way, the 'awake' bout of minor motor status that had on Mon that

scared us silly (used to always have this on awakening pre diet - first thing to

'go' when he started the diet) was I think because his ketones were only just

1.5 .(managed to test him about an hour later). He has never been this low

before, so pretty definite this allowed the bout of status to happen - haven't

seen it since Mon, and his ketones haven't dropped like that again. Anyway,

reading his admission notes today, not one staff member at the hospital,

including his neuro, have considered this relevant enough to document. Not

mentioned anywhere, and we really stressed the point to all the Docs (and there

were many) that examined him. A few notes made about their opinion the depakote

has been taken too low, but keto treatment obviously not considered important

enough. Really capped the day off!!!

Off to sleep on it all,

Hill in NZ