Meds

Can I tell everyone how much I hate this! Sooo Zoey has been on prednisolone now for 5 weeks. 2 of that on the higher dose. While it seemed to help a little it has not stopped her seizures. Now we have to decide what to do next! At first James and I both agreed to go to ACTH.  Its a much stronger steroid that a lot of people have had success with. Also it has the same side effects as what she is already taking. The other option is Vigabatrin. Still a successful med, but can create tunnel vision for kids. Knowing that ACTH seemed to be the better option despite being ridiculously expensive. Like 120,000$ expensive. Talking to the neurologist she told me that those kids who started on a steroid and went to vigabatrin and the other way around as well had a success of about 75%. Seems like good choice right? Now here's the fun part. Vigabatrin is 2 weeks initially, but then can go for 6-9 MONTHS. where as ACTH is only 2 weeks. So now we are stuck.. We have been told that we need to get the seizures to stop as soon as possible. Anyway tricky tricky and no clue how to decide. We will be doing another fast this weekend and try to figure out what we have to do. I have never felt as emotionally, physically drained as I do now. Such lows, its so hard to stay positive. Zoey had an aweful cluster of seizures last night that had all of us freaking out. They lasted longer and looked horrible especially when she looks like its painful! Cannot wait for sleep! At least with sleep you can feel better. We go on Monday for a meeting with the neurologist to decide what course to take for miss Zoey. Wish us luck!