A Day In The Life Of Scott

If it can't be expressed in figures, it is not science; it is opinion


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Too much to do, and I love it.

So, it turns out that I haven’t got enough hours in my days to be completely satisfied. Somehow I have to find time to work, play, and sleep.

Since my last post, I have been heavily into the work and much less into the play and sleep.  The science fair at school took a lot of time and preparation in January and February. The committee and I organized everything and completely re-vamped the fair from previous years to include projects from all students in the school. Elementary students prepared class projects, which in my opinion turned out awesome for the first time having done projects. Grade 6’s up to high school prepared projects that qualified them to go the regional First Nations science fair in Saskatoon. I took two teams on to the regional fair earlier this week. They never placed 1st or 2nd over all to make it to the national science fair in Fredericton, NB, but they did both place 2nd in their categories. They did awesome.  This was basically a 2-night and 2-day field trip that I chaperoned.  I love taking kids on field trips, but it is so draining, and I was drained to start with.

At the end of February we got a call from one of James’ surgeon’s office. His March 5th appointments with the neurosurgeons and his specialist had all been cancelled and fast-tracked to February 26th.  Everything was rushed so that they could get him in for surgery on Monday, March 9th.  While all this was great, it also meant that I was booking more days off work than I had expected in a very short time.  All these days off meant more planning and busy work that needed to be corrected…. (blah… while I love my job, I quite dislike the chore of correcting)

So, anyway, the doctors all felt James would be best with the surgery, which they changed. Originally he was supposed to have a section of brain tissue removed to reduce the number of seizures. His previous surgery back in January revealed some interesting findings. They were able to precisely locate the seizure loci (or places where seizures begin) in his brain.  This was pretty cool in itself because even with the electrodes and sensors in his brain back in January it was not really expected to get this information.  This was all well and great, but they could not safely remove the brain tissue from this new location without risking paralysis in his left leg and arm. Though this might not be so bad for some, James is left-handed.

The new plan of action was Deep Brain Stimulation (DBS) surgery.  Basically they placed two electrodes into his brain using a sophisticated computer and a robot. Each electrode placed next to each of the two seizure loci in the brain. These electrodes are then hooked up to a battery that was implanted and programmed with a specific pulse and electrical current. The current pulses stimulate the brain cells in the area, basically preventing them from entering a refractory state, stopping them from firing. In essence, it makes them too tired to work. A neuron that is too tired to fire, will not fire, and thus will not be able to cause a seizure.

The odds were that over the next 24 months there is a 15% chance of being seizure-free.  Not a lot, but better than the 0% that the doctors in St. John’s, NL told him back several years ago. At worst, there will be up to 80% improvement in his quality of life, as long as he continues to take his meds. Gradually the specialist would like to wean him off a couple meds, so that even though he has to continue to take them, he will not have to take so many.

We are two weeks post-surgery and there have been seizures, but honestly, they have been tiny. His battery pack has a computer and remote control for recording seizures during the event, but by the time we get the remote out the seizure is over.  Interestingly enough last weekend he messed up his meds and missed 3 doses. Normally this would result in BIG seizures and maybe a trip to the ER if he was really lucky.  With the device installed, he still had four seizures, but they were less than 3 seconds each – long enough to witness, but too short to be a problem, and he was not left groggy afterwards.

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Back to my schedule issues for a moment.   I had to book 2 days off for James. One for the new appointment dates, which meant that at the very last moment I had to cancel my already-booked day off from March 5th. On March 9th I had to book the surgery date off too.  Somehow I still had to cram time in to finish 2 math courses that I was nowhere near finishing on time by last Thursday, but there was little I could do. I planned for a sub for that Monday and went on to Saskatoon.

I left James at the hospital until I was told to pick him up. I had kids in till late in the evenings prepping for their exams and working to bring their marks up. By the time I got home most evenings I was dead in the head. Somewhere between meetings, classes and tutoring I had to make 2 math exams and get all my correcting done before the term was over.  Thursday morning, March 12th, I get a call from the hospital while I was at work – James was being discharged.  Argh…. I now had to go to Saskatoon after school – 2 hrs in, 2 hrs out.  Waste of an evening. Upon returning home I had to make 2 math exams that I never had time to make all week. They were done and they were beautiful exams, but they were not done till 5:30 in the morning.  Oops, and I had to get up at 7:30 for work.

That same weekend, as if it wasn’t enough to be swamped with exams and stuff, Science fair in Saskatoon was March 16 – 17th. We were leaving on Sunday, returning on Tuesday.  I had to prep for 3 courses I had not even started teaching yet. I managed to get all of my exams corrected, marks and comments into the computer. I even managed to get all my planning done for two days. Needless to say, by the time I got home from Saskatoon on Tuesday after being “on” for 2 days with the kids, I was basically dead on my feet and my head.

I started back to class on Wednesday, and my new classes seem like they are going to be awesome.  I am teaching computer science and Math 10 and 20 Workplace & Apprenticeship (basically trade school math). All three classes seem like they are going to be awesome.  I love when things work out nicely like this.

Oh, I nearly forgot, Thursday evening I had a math night at school to help out with. That was interesting, I planned for helping junior high kids with adding and subtracting fractions, but ended up working with grade 5-6 kids instead.

Last night I spent 4 hours after school cleaning all the computers in the computer lab. They were so messed up it was driving me nuts and I don’t even use them. Didn’t get home til nearly 8 PM on a Friday night.  I tried helping a friend with some coding on his website, and I fell asleep on the keyboard… oops.   When I woke up all James said to me was  “having a nap were we?”  As if it is normal to fall asleep on the keyboard.  haha

The fun does not stop there.  I had staff meetings in North Battleford all day Monday and parent-teacher meetings on Tuesday evening.

I think that is almost everything done after that.   And so it should be, I had been swamped since February.

As a final note, as busy as I have been, and as sleepy has I have been while trying to get everything done in limited time, I am not at all complaining. I am a teacher, and working with the kids and enjoying every minute of it is exactly what I signed up for. Busy as it has been, I have been loving every minute of it.

I even signed up for more. I am planning to be returning to Little Pine School in the fall as the primary math/ science teacher for junior and senior high.  Not sure how that will work yet, since I am only one person, but I am sure it will be fun to figure out.

That has been my last 2 months in a nutshell. Too busy having to much fun to have time to type.

Until next time.


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It’s been along and twisty road

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.

Awesome!