Weaning sodium valproate (epilim)

[Guest guest]

Hi there,

We've been on the diet since Nov 03 with pretty good results - no

seizures whilst awake this year, and very gentle brief night time

tonic clonics. His EEG also shows a vast improvement in his non

convulsive activity.

I've been pushing the neuro to reduce meds for the last few visits.

He eventually agreed to reduce the Epilim (sodium valproate) by 1ml

(40mg) per month. As 's on 22 ml (880 mg) it would take

nearly 2 years to get him drug free at that rate! He's also on 40mg

lamotragine which the doc isn't touching. I felt like he was just

humouring me with this reduction routine.

Trouble is, even with this tiny reduction we've seen an increase in

's early morning sleeping seizures - we had one at 5.30 a.m.

and I've spent the last hour in tears with an overwhelming case of

the " what ifs " !

What are other people's experiences of weaning Epilim? I DO still

want to get rid of these nasty drugs, which never seemed to make

much difference anyway (although epilim DID stop the drop attacks,

which were particularly nasty), but I'm afraid of another downward

spiral after a pretty stable year.

Cheers

Gail

mum to (5) Lennox Gastaut