Friday, July 13, 2012
They sent us home today. Like I mentioned before, I don't know that I'm ready to be home, but here we are. We're getting on with life. It will be a whole new life, for awhile at least. For instance, Levi had four seizures today. My job, as stay-at-home-mom is to make sure none of those seizures last more than five minutes and that he doesn't have more than two in an hour, otherwise I have to administer emergency medication and call his doctors. So, I pretty much have to watch him every moment of the day until we've found a treatment that manages the seizures. And that is the next step - finding a successful treatment.
And the current treatment plan is:
We were sent home with five prescriptions! We have already begun weaning him off of one, which will be finished tomorrow. Another is the emergency medication that I mentioned previously, so we'll only use it if we absolutely have to. But, that still leaves three that he has to take on a daily basis - the vitamin B6 - twice daily, prednisolone (a strong steroid) - 4 times/day, and Zantac once/day (because the steroid will upset his stomach). So, they are hoping (WE are hoping) that the steroid will help to calm/stop the seizures. We have a follow-up appointment in two weeks to determine whether the steroids are helping. This will include another EEG (with all the wires connected to his head). Depending on EEG results and whether the seizures have increased, stayed the same, or decreased they will either increase the steroid dosage, keep it the same, or begin to gradually decrease it. We'll have another similar appointment 2 to 4 weeks after the initial follow-up appointment. The hope is that we can gradually taper Levi off of the steroids completely and stop the seizures altogether. At the very least, though, we'd like to get them under control and potentially put him on a milder medication to manage them.
There will be more test results coming in a few weeks as well which could change the treatment plan if any of them come back revealing a specific cause for the seizures.
So, there you go. This is the plan as I understand it. (Speaking of "as I understand it", I would like to throw a disclaimer out there. All of the information/conclusions. in this and previous posts, from the doctors is "as I understand it". Seizures are such a complicated condition that even the neurologists don't claim to completely understand them and then I'm expected to understand the neurologists as they try to explain something that they don't completely understand. With that, I'm sure I have plenty of misconstrued information about seizures, etc...., but it's what I understand is going on at this point.)
Thanks again for the calls and texts and prayers!! Even just seeing the huge numbers of people reading this everyday is amazing and so encouraging! We have a HUGE support group. Thank you!