The last month has been interesting for me. I was laid off from work at the beginning of March, so I have been adjusting to having a very limited income because my unemployment has not yet kicked in. While it has been a little more straining on the finances than I am used to, I am not complaining. After working hard for the last six and a half years and being completely dedicated to my job as a teacher, the break is somewhat welcoming – for now.
What has been more frustrating than losing my job, is watching James have so many seizures. During the last few weeks the number of seizures increased dramatically again. Last fall, for two months straight he was having 5 to 10 every day; they gradually came down the more normal levels after we dealt with some of his personal issues. They have been creeping back up to 2 or 3 every day.
Back in February I sought out some counselling for him because there is only so much I can do to help the poor kid with his troubles. I have tried to talk to him and he would only scrape the surface of the issues – no doubt to get me off his case. So, I figured a professional 2 or 3 times a week would be best for dealing with his complex issues. The goal here is to eliminate some of his seizures, because it isn’t enough that he has epilepsy, but he also has non-epileptic seizures induced by stress, anxiety and bottling things up.
I have learned that epileptic and non-epileptic (NE) seizures pretty well look the same, and so I have no way of knowing which is which without an EEG scanner. Given that he is getting counselling, I would like to assume that it is working and the NE seizures are stopping. However, over all the seizures are not stopping; so in addition to counselling I am helping him to gradually quit smoking. He used to smoke 15 – 20 cigarettes every day, and I now have him down to 4 – 6 each day. I am not above believing that his nicotine withdraw could be causing some of the seizures, because I have read on the epilepsy websites that this is possible.
I am not even the one having the seizures and it is frustrating me because we have been doing everything possible to try to eliminate them. While they have been reduced to less than 15 per week, he is still having them. Uncertain of what to do, and believing whole-heartedly that the meds are no longer working I managed to get an appointment with his neurologist for earlier this week. We made it clear that meds were properly regulated, he is finally taking his doc’s orders seriously to quit smoking, and he is getting proper counselling; seizures are still happening, and often. Why? Of course there was no explanation, but I was armed with information and descriptions of a month worth of seizures.
No, In addition the 3 anti-epileptic drugs he was on, he has now been started on a new one. Divalproex, Trileptal and dilantin alone did not seem to doing anything more after 8 months. Now Keppra is in the mix. He started taking them on this passed Wednesday, and so far has not had any seizures since. I want to believe that it is the new medication, but I think it is too soon to tell just yet.
I’ve done a lot of reading into this Keppra. Some swear by it, while others were unable to deal with the side effects – mood swings, aggression, depression, suicidal thoughts, among others (but these are the main ones). I have been watching him closely, and the mood swings are definitely there, happy one minute, sad the next, and angry the next. I hope this passes as his body adjusts to having this new drug in his system, or else I am going to go nuts. As if a moody teen isn’t bad enough, having this exacerbated by medication is going to make things very challenging indeed.
Anyway, I have been asking James to let me know when he feels differences in his mood or emotions so that I can make a note. I want to be prepared in case it gets too bad and we have to try something else. I am crossing my fingers and toes it will not get worse, and it will allow his seizures to be more controlled. I think every kid deserves a fighting chance at a normal life. Being limited by seizures has got to be horrible when you look around and everyone else is able to do things without restrictions.
I cross my fingures and hope that this works. Been only 3 days, but so-far-so-good.