Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Hi Saro, Yeah, ready and waiting for a med-induced backward slide, but like you say, the seizures need to be stopped at whatever cost right now. Never thought I'd hear myself say that.... If it does work, my hope is that it is only a temp measure, it's use primarily as a 'breaking' med, but I can't honestly see anyone willing to wean it if we do get control back. And because I can't really let 's ketones get much higher than here they are right now because of his acid/alkaline woes, we have nothing to step back in with, except maybe a repeat ACTH course, which of course has it's own set of side effects and risks. If a lot of the recent stuff has been from cold turkeying the diaz, topomax's main AED action is GABA enhancement, not the same GABA receptors as benzos from what I can gather, but maybe close enough to be what he needs right now. Dunno, guess work as usual, but I do know this - whatever nasty topomax side effects are waiting round the corner, they can't affect any worse than those benzos have for 3 yrs plus, or can they.... ----- Original Message ----- > , > Thanks for taking the time to update us. > Poor has had such a lot to put up with. I hope topomax gives > him the necessary respite from the seizures. Our experience with it > was that it stopped sz but as the dose was increased it made Rohan > very depressed/ lose skills at school. If you see a less of a response > than the recent encouraging ones you've seen with it could > be due to this side effect so don't feel discouraged. If it stops the sz > it would have done its job. > I don't know what to say except that we are all thinking of you > and hang in there. > All the best > saro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Have you tried Taurine? It stopped 's bad spate of seizures in their tracks. Might be worth running by the neuro. Take care Jill At 12:45 PM 21/12/2003, you wrote: >Hi Saro, >Yeah, ready and waiting for a med-induced backward slide, but like you say, >the seizures need to be stopped at whatever cost right now. Never thought >I'd hear myself say that.... >If it does work, my hope is that it is only a temp measure, it's use >primarily as a 'breaking' med, but I can't honestly see anyone willing to >wean it if we do get control back. >And because I can't really let 's ketones get much higher than here >they are right now because of his acid/alkaline woes, we have nothing to >step back in with, except maybe a repeat ACTH course, which of course has >it's own set of side effects and risks. >If a lot of the recent stuff has been from cold turkeying the diaz, >topomax's main AED action is GABA enhancement, not the same GABA receptors >as benzos from what I can gather, but maybe close enough to be what he needs >right now. Dunno, guess work as usual, but I do know this - whatever nasty >topomax side effects are waiting round the corner, they can't affect >any worse than those benzos have for 3 yrs plus, or can they.... > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.