On the 20th of September Alex had a neurosurgery checkup. Because he’d been admitted for odd episodes a while back he had been scheduled a checkup appointment six weeks or so post discharge, so we dropped Jenny off to Grandma so she could still get to her ballet class (thanks Fran!) and Alex and I headed in. Luckily, though I didn’t know it at the time, I had parked in a regular 2 hour park and put Alex’s disabled pass up, which meant I had a four hour park.
We got to the neurosurgery clinic space and it was jam packed. This was unusual, every other appointment we have had with neurosurgery has been on time and fairly in and out. I know people don’t like waiting, though it’s generally expected to some degree when you have a doctor’s appointment, but in this particular case I was more than happy to. It turned out that the clinic was running late due to two of the four doctors meant to be there having been called into emergency surgery.
We have been the emergency surgery. Given the choice, I’d most certainly rather be waiting 2 extra hours for a checkup.
Of course sitting there for a few hours I’d started chatting with some of the other parents, and when I needed to quickly visit the toilet 20 meters away I was happy and confident that Alex would be fine, and that there were other parents and nursing staff there to keep an eye on him. He was curled up, lying across two chairs with blankie and seemed perfectly fine. I told him where I was going and how long I would be and he was fine with it. However, in the literally 2 minutes I was gone he sat up, announced to the world he was feeling sick and started in on one of his episodes! It followed the same pattern as all the others, although this one was a very mild version, he felt sick, lost his balance, slurred his speech, didn’t vomit, felt fine again, and then had a 10 minute nap.
It was, in a way, kind of handy that he’d done this in the waiting room so the nursing staff could see and report back to the doctor.
When we did get in to see the doctor she went through all of his recent scans, he’d had pretty much everything during his admission – CT, MRI, two lots of x-rays, and a subsequent EEG, and all the results were normal.
The only thing which was out of the ordinary was a marker in his recent blood tests. As of June a marker called C reactive protein, which is usually point something or at most 1 micro grams per litre, was measured at 56 and subsequent tests showed it rising past 90. Unfortunately this isn’t a marker which gives you a diagnosis, as in, if x is raised then it’s y problem – it merely shows that something is amiss, without really giving a huge insight into what that something is.
The doctor we spoke to did say there was the possibility that the raised level was linked to an immune response of some kind, which would fit it well with our own personal theory that these episodes only seem to occur when Alex is unwell, and the timing of the raised protein level coincides with the onset of these episodes.
We both agreed that another blood test would seem to be in order, so after we finished with the doctor we headed upstairs to IMVS for a finger prick test. Alex was very brave and picked up a new word – phlebotomist – after asking if the lovely man taking his blood was a nurse or a doctor.
A quick stop in the cafe to get his reward (a chocolate frog) we headed back to the car with about 4 minutes to spare on our park!
We are waiting on the results now, and are not really sure if they will clarify anything but <touch wood> Alex has remained healthy and episode free ever since!
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