Although James has been dealing with the seizures, medications and hospital visits for 18 years of his life, it is looking like this may change soon. On Christmas Eve 2014 we recieved a call from the neurosurgeon’s office at Royal University Hospital in Saskatoon. He had two weeks to get back into the family doctor for a pre-op appointment before having to go to the hospital again for more pre-op tests and X-rays.
Before I go any further, I should make a note of recall, James moved in with me in July 2012. Behaviour and mental issues resulting from his past aside, he arrived with a paper bag of anti-seizure medications that he was barely taking. The next day he ended up in an ER in Grand Falls-Windsor, Newfoundland where they pumped him full of meds, checked his levels and sent him on his way. In the month that followed I insisted on getting him back on a regular schedule for the medication as he was supposed to be before he was scheduled to meet with his neurologist in September.
This was the first of the doctor visits, and it did not prove to be very fruitful, as he spent 5 minutes greeting James and then 5 minutes speaking with the dictaphone about the next appointment. I was new to this whole thing and talking to doctors is not something I was good at. I never even went to the doctor for my own problems, let alone a neurologist for someone else’s problems.
In the months that followed I managed to get James’ medications back on track, but with little effect on the seizures. Although he had tonic clonic (grand mal) seizures, he also had what the doctor called pseudoseizures that presented themselves as complex partial seizures. What on Earth is a pseudoseizure? It took a while, but I finally figured that out too. I was making it a special point to get to the bottom of all the seizures. I did my research, and I continued to do my research, trying to get to the bottom of what was causing all the seizures.
I very quickly was able to figure out the root of some of the pseudoseizures. Stress! Lots of stress; from a horrible and traumatic childhood, and being bouced around the foster care system because no one wanted to keep him. I got him enrolled in reguarly meetings with the guidance cousellor at school and had my own regular “chats” with him to help him in venting the demon thoughts that led to the pseudoseizures. Slowly, the number of complex partial seizures deminished from several each day to none, and only in a matter of months. I insisted he keep seeing the guidance cousellor on a regular basis to ensure they stayed away.
Now, this was one problem solved. However, even though he was taking three different anti-seizure medications, he was still having grand mal seizures. This was a problem, because it meant that even though the complex partial seizures were gone, and his meds were perfectly on track they were not working. In April of 2013, we met again with the neurologist in Grand Falls. I showed him 6 months of seizure diary, but he still did not believe James was having anything more than pseudoseizures and did not think he actually had epilepsy, even though the previous medical records already indicated that he did.
This time, I was more prepared, I had the seizure diary, and I had a plan. I was going to insist on a medication change because the current meds were clearly not working. Evidently my preparation worked, because in addition to oxcarbazapine, dilantin and divolproex the doctor now added keppra to the mix. After two months and no change in the seizure activitity I insisted on going back to the doctor to get things changed again. The doctor was effectively useless. While he did increase the dose of keppra, he did not want to look any further and did not want to see us again till the fall. Nice doctor. I always thought the doctor was supposed to try to fix people, not push them away because the case was too difficult.
I was on unemployment, broke and unable to do much, but I kept on researching – trying to figure out why the seizures were happening, what caused the epilepsy in the first place, and even what effect it was having on James’ brain. My plan was to attend one more appointment in Grand Falls and see how it went before finding a second opinion and finding him a new doctor, one that might actually give a damn.
Of course, as luck would have it, by September 2013 I was offered a job in Saskatchewan, and I had to move. Although James did not want to, I stongly encouraged him to jump on the wagon and check out the new sights of our wonderful country and perhaps a new doctor. James started school with me in Neilburg, Saskatchewan, but was unable to finish more than a couple months because he was having so many seizures. After spending a November evening in another ER in North Battleford, one of my colleagues insisted I make the call for a doctor’s appointment at a clinic not far from here.
This new doctor made a referal for James to see a new neurologist in Saskatoon. We attended this appointment and managed to get a same-day referral to an epilepsy specialist at Royal University Hospital. That same day James was told he would be admitted for a week of observation so that they could hook him up to the machines and record his seizures on video and EEG. This happened in January 2014. Following the observation week, the specialist changed James’ medication. Keppra turned out to be a wrong medication and should have been prescribed in the first place.
In February 2014 James was told that he was a good candidate to get surgery to remove the seizure tissue from his brain. The scans began… MRIs, PET/CTs, even neuruospychological exams. After months of waiting, we met with the specialist and the neurosurgeon in August; the surgery was going to happen. Unfortunately the waiting list was long and the wait would be long, even though James was short-listed.
It was a long wait, but we got a call on Christmas Eve. James was to go to Pre-op on January 5th and the first of two surgeries on January 12th. The possibility of brain surgery is enough to make anyone scared. The surgery last week was a simple procedure, placing deep electrodes into his brain allowing the doctor and his team to determine the specific location of seizure activity.
Last week, after making the discovery we got the best news someone in James’ position could recieve. Actual brain surgery to remove a portion of his brain is very risky and may not work. James is, instead, getting tested for deep brain stimulation. The team of doctors working on his case has been stimulating his brain for 2 days now, and slowly removing him from his medications. So far, he is on half the medication load and still not having any seizures. The goal is currently to determine how low the medication load can be before he has seizures while his brain is being stimulated.
If the testing phase works, James will be returning to the hospital in a few weeks to have a stimulator placed in his body and new electrodes placed in his brain.
This is the best possible situation for a special case of epilepsy that does not seem to have any cause and has been resistant to anti-seizure meds. Brain surgery is still an option for later if this does not work, but this has been giving promising results so far. Not bad for some one who was told by doctors in Newfoundland that he would not be able to get any surgery.
The rest of us are simply excited that things are working, and in the next few weeks James could be virtually seizure free.
It’s been a long and twisty road, but it seems to be straightening out. Something that could not be done without the amazing doctors that we have encountered at Royal University Hospital. Doctors who believed that it would be possible to help this kid to at least have a 75 – 80% improvement in the quality of live, and they are working hard to do it.