Any long term users of Frisium (Clobazam) out there?

[Gillian Lim]

My 9 year old son has been on Frisium for 4 years now. We had managed to reduce his seizures from 7 to 8 seizures in a day through careful control of his diet (GFCF, sugar/MSG/nut free) and his last full seizure (falling down shaking) occurred in Oct 2009. Thankfully, we were able to get it down to one or two auras a week for a long time but recently, it has increased such that he experiences auras four or five days out of a week now. His neurologist is advising us to increase his dosage once again and wonder if there are any long term Frisium users out there who can advise and also, whether getting rid of auras altogether should be the priority (i.e. helps in avoiding developmental delays, learning ability etc) rather than worrying about the effects of the medication? Would be grateful for any of your views!

 

[Nakamova]

Hi Gillian, welcome to CWE!

I edited your query, so folks who know Frisium by its other name (Clobazam) will see it and respond. I don't have experience with it myself, though I understand that it is a fairly powerful benzo, so sooner or later you'll probably want to have him switch to a different med.

Best,
Nakamova

 

[cazzy]

i been on clobazam for over 15yrs,it suited me and if and when my e is not so good i increase have extra that day.i take 10mg at night....i dont know what to tell you really as i been on it years i take one at night it spose help sleep but that worn off helping few years ago...i have tried decreasing it but my e worse,alto i under no illusions i am addicted to it now and dread any smart arse dr who wants take me off it bu i in my 60's,i would say use it wisely