Good evening. Once again it is time for an update, but this time it is not about me. It is about James.
In my last update I had mentioned that I made an appointment for James with a doctor at a clinic not far from here, in Maidstone. Well, that appointment went well. I told the doctor that out main reason for going in was because the seizures have been taking over and we need to get in to see a specialist as quickly as we can before he slips into a big seizure and does not come out. Of course, the doctor was more than happy to appease us and took the necessary action to make it happen – did some blood work to check is medication levels and tracked out James’ medical records from Newfoundland. The follow-up appointment is for next week to go over those results.
However, (and this is where good things happen) James was home from school on Monday of this week (one week later) and received a phone call from a neurology clinic in Saskatoon. Of course, I did not completely believe him at first when he told me over the phone because it seemed like it was way too fast. But, it was all true, and so we went in yesterday.
Never mind the fact that I got lost trying to find the clinic in an unfamiliar city and we were 1.5 hours late, but the doctor still took him in. I figured something big must have shown up on his blood work results to get in within less than 2 weeks. When I asked about those results, apparently there was “nothing exciting” on them, and so it was just good luck on our part to get in so fast.
After 45 minutes in the office discussing seizures, medications and family history, the neurologist said he was going to make a referral to a seizure specialist. Not expecting it to happen, I asked if he could see about getting him in that day. The doctor said he trained with this epileptologist and would see if he could call in a favour since we had to drive two hours to get in.
Ten minutes later… “He will see you this afternoon. Your appointment is at 2:30.”
That was unexpected.
We went over to the hospital where James contributed his brainwaves to epilepsy research while we waited for the doctor to get out of a meeting.
We discussed the meds, seizures, types, family history, etc. Two hours later we were getting told that James is going to be getting an “urgent” EEG session for monitoring. The doctor is going to mess with his meds and see what they can do. He was surprised to see that James is on the maximum dosage for 4 different anti-seizure meds and is still having lots of them every week. He said he’d have put James on the EEG that afternoon if it was available, but it just couldn’t be done.
So, now we wait for the call regarding the EEG seizure clinic. I can bring him in, drop him off and pick him back up a week later. Hopefully with changes that will work. If this does not work, we will explore other options, but for now, this is a great shot so the doctors can see what is going on.
Honestly, this is the best news we have gotten in a long time. We are both anxious about getting the call for the new appointment because the doctor said, although the wait could be close to three months, he is going to try getting him booked in sooner so he doesn’t have to wait so long.
Also, although James has not been in school for the better part of 2 weeks because of the seizures and the wonky sleep cycle that has been resulting from them, all the staff and teachers ask me every day how he is doing. Today they were all so happy to hear that we are getting him an appointment with the epileptologist.
It is nice to be working in a place where the staff understands why he is out of school. I spoke with the principal this evening before I left work and she said we’ll be meeting with his teachers and him to discuss some options for his courses because he has missed a lot of time at school. Just another of the reasons why small schools are the best schools to attend and work at, there is a huge pool of support for everyone when they need it, whether it is academics, personal issues or medical issues.
Well, I must go find some supper, feeling a little peckish. Until next time.