*Names changed for privacy
As of March 27th; James has been living with me for 8 months. It has been a very steep learning curve for both of us. I have been learning the whole parenting thing, and he has been learning to be a more respectable person without having to resort to drugs or alcohol. This learning curve may in fact be steeper for him, because I have at least had some experience in acting in loco parentis as a teacher, and have been dealing with teenagers for years, so there were not as many surprises as there perhaps could have been.
When James moved in, I knew that he was on a lot of pills, and I knew he had epilepsy; I also knew he had a troubled past. I just didn’t know how bad any of it was until after the first weekend. While I am pretty sure right up to the minute I took him away from Joe’s driveway he was trying to arrange a drug deal with some creepy guy visiting the community, he vows he was just trying to get a smoke. Either way, to remove him from this environment for a few days, first thing we did was go with Joe’s family to the cabin for the weekend. This served a great opportunity to get to know James better without the threat of all the crap that he had previously been involved with in Conne.
I was new to the whole epilepsy deal, and all I really knew was that he could have seizures – I had never seen one except in movies, and I certainly never had to deal with giving pills. That Saturday, we left from the cabin to spend the afternoon in Grand Falls. Just as we left the mall and were en route the highway, he had two tonic clonic seizures lasting a few minutes each. He said nothing was ever done after a seizure, but being new to this experience we went to the ER. We registered. 45 minutes later James was getting impatient, and so we left. He had a third seizure before we even left the hospital parking lot. This was all very interesting, I gave him his morning pills, and the next dose was at suppertime. Expecting to be home long before then, I had left his pills at the cabin. Little did I realize that I was going to end up spending 8 hours in the emergency room before I could return to the cabin.
For me, this was a huge wake-up call. First day back in Conne, we picked up a pill box for allotting each dose for a week. I was not going to be missing any more doses, and definitely was not going to be forgetting to bring the pills when we left the house. It had turned out that the three seizures that day were due to unregulated medications – that is not taking medications when he was supposed to be.
From this point on I made it my goal to learn as much as I possibly could, not only about the meds and their side-effects, but also about the epilepsy in general, because I really knew very little.
During the first week James was with me he was completely seizure free. We stayed up late into the mornings chatting and getting to know each other. It turns out we were not so different, I was able to find a common ground to help reach him in a meaningful way.
I brought him home to my parents two weeks in. This is when the seizures began. During the road trip to the ferry, and then onward after we reached Nova Scotia the seizures continued. My reading would suggest that it was excitement or possibly the extreme humidity we were experiencing that was triggering them. While it was nice to have company for the long trip, much of it was still spent talking to myself because James was having so many seizures that he could barely stay awake long enough to carry on a conversation.
Since that week in N.S., James’ seizures have been erratic. In September and October he was having up to 10 seizures daily. We had met with the neurologist in September and little feedback. I was not knowledgeable and James was ill-prepared to talk about this seizures with the neuro. We tried speaking to the nurses here in Conne River, and they all blamed lack of sleep – and while this could have been part of it, I was (and am) not convinced. The first 10 days he was with me, we sat up late drinking coffee and talking until 6 AM and he had no seizures; so even in my mind there was something else going on, I just could not put a finger on it.
Some half dozen visits to the nurse and social worker later, we determined the cause, and we now understand why medications were not working to stop them, even after 3 months of perfectly regulated pills. Unfortunately, James has a number of emotional issues from his past that serve as triggers for non-epileptic pseudoseizures which mimic real seizures but cannot be treated with pills… Who knew??
I have made every effort to learn every aspect of James’ epilepsy so that I can better understand why he is having seizures, and what his triggers could be. We have been keeping a seizure diary since August which has proven useful. James is seeking counselling during the school weeks to help deal with the issues that cause pseudoseizures, cutting back to quit smoking and proper medications are keeping the numbers low but not eliminating them. As the person who witnesses most of the seizures, I am finding it very frustrating; not because he has seizures, but because with all the efforts we have made in 8 months to eliminate them, they are still happening, and sometimes quite violently.
I have been seeking counsel from others on the internet who experience seizures so that I can better deal with this situation. Today we were in to see the neurologist again. This time I was very prepared, and armed with knowledge and questions. Tomorrow we start on a new medication – hopefully the one that will help eliminate the seizures.
From the parenting side of things, I have grown as a person, and I would like to think that James has too. I am beginning to realize how much crap my parents had to deal with having 3 teenagers in the house at once. Sometimes I am finding it unbearable enough as it is with one. Most days I do feel a sense of accomplishment, because for each little teenage-attitude adjustment that occurs, there are many more better days where I can see just how far James has come. Those who do not seem him every day tend to notice it more. Both of his grandmothers and sister comment to me often about how much he has changed – hopefully for the better.
I vowed from the day he moved in, that even though we live a couple hours away I would not stop him from seeing those who care about him. I think that when a youngster comes from a world where they believe no one gives a crap that it is of the utmost importance to encourage strong bonds with those who actually do care. We visit as often as we can with is Nan and sister, while less often with some family members I do encourage contact and try to meet whenever we can.
So far, things are going well. James is on track in life and school, and with any luck we can get the seizures eliminated as well. Wish us luck!