Re: Topomax etc - Tracey

[Guest guest]

Like with everything else though Tracey, I am not sure it is actually the

topomax that stopped the night seizures, as the majority of 's used to

come as his diazepam peaked. Because he was so doped up on this med, we used

to give him doses of the diaz spread out evenly over a 24 hr period. This

meant he had a dose at midnight and at 6 am, and lo and behold, most of his

sleep seizures were around 1 am and 7 am...That''s what I meant by having

pretty strong 'ammunition' to eventually dump the stuff.

However - he also used to have difficulty maintaining good ketones thru

the night, (usually '4' urine ketones only on waking) and since we

introduced topomax, this has stopped, now he is invariably '8' at least on

waking. So if the topomax has helped, it may not be the AED effect so much,

but what it has done ketone wise for him. But he has had a few odd mornings

of '4' ketones and still he has not had seizures those nights, so maybe this

one isn't involved...not sure...

Also, we used to have trouble maintaining acidity with - and a lot

of times he had breakthrough seizures were when his ph had gone alkaline.

Meaning that he maybe is one who needs the acidic component of the diet for

seizure control. The topomax has definitely done that to him - ie - made him

more acidic, actually a bit of overkill, so perhaps this is one of the keys

to why it may have helped.

See what I mean about not knowing exactly what has helped what with him?

Having said all that, I can't deny that even though a lot of changes

happened at once, introducing topomax was definitely one major change in

there, and yes, it may be that this was/is his 'wonder drug'. I guess I am

sceptical because13 previous ones failed to do any good whatsoever and find

it hard to believe that one finally did.

It does have an adverse impact on him I think, in both speech and

cognition, especially as his morning dose peaks, but not enough for me to

say he can't remain on it because of that. Part of my hesitation in saying

exactly what impact it does have on him is that his speech is 100% improved

on the past 3 yrs when he was on benzodiapines, that used to slow and slur

his speech hugely - I had no idea how much until he was off them.

So to me, overall, he is a new and improved in all facets,

including cognitively, but just how much better he could be if not on

topomax either, I don't know, but hopefully one day soon I will find out.

His concentration isn't the best, and this may be from the topomax too, but

it may also be a legacy from 3 yrs of seizures and toxic med combos, or his

underlying syndrome fullstop. That is all a wait and see thing though.

The fact that the topomax was theraputic within 5 days rather than

building up over weeks/mths means should actually be suffering quite

badly from side effects, it is supposed to be incremented up slowly to avoid

severity of a lot of them, but for some reason he isn't too bad on it at

all. Pass as to why??

----- Original Message -----

> -

> Just read your post to Gretchen and noted that had nocturnal

> seizures...which were well controlled by Topamax?? Very interesting as

that is

> Skyler's resistant seizure pattern as well. We've had two attempted

go-rounds

> w/Topamax but both w/pretty severe cognitive and language side effects,

even at low

> doses. How has fared on these two arenas w/the Topamax?

> Tracey