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Ann - zonegran question

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Hi Ann, the question I asked about weaning the felbatol was on behalf of

someone else, I don't actually know much about zonegran, as we haven't done that

one with either, but the little boy in question has MAE - or Doose

syndrome, (same syndorme as my son ) main seizure types are myoclonic,

drops attacks and absences, with some TCs and in some rare cases tonics and

focals. So I guess it pretty well ecompasses most of the seizure types.

I suppose it is like most of the others - some respond, some don't, as I said

we never tried it, but zonegran is one I would try to avoid if on keto (the

little boy I was asking about is not) as it is similar to topomax and diamox as

far as their acidic inducing tendencies are concerned. Meaning developing

metabolic acidosis is an increased risk.

Having said that - we believe the topomax with has possibly helped

seizure contol on the diet by increasing and maintaining his acidity, but we are

not v happy about maintaining him in such an acidic state for a prolonged

period. Rock and a hard place really...

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

From: kenai22000

Dear ,

We are thinking of putting our son on Zonegran. He has

infantile/myoclonic type seizures. You got my attention when you

said that the Zonegran had worked for a year for the little boy.

What type of seizures does he have? Does anyone else have any

experience with Zonegran? Thanks!

Ann

> Hi all,

> Never done this med here with , but am seeking info about

weaning it on behalf of somebody else. Mainly trying to find out how

hard it was to wean, and whether it is one that is known for nasty

withdrawals.

> The little boy concerned has been completely controlled on a

zonegran/felbatol cominbation for nearly a year now, and they are

pretty certain it is the zonegran that is controlling the seizures,

as felbatol on it's own never saw any real benefit.

> They have decided to try and get him down to monotherapy with just

zonegran in there, so would appreciate knowing how others went about

weaning felbatol and how they fared,

>

> Thanks

>

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