Desperate for Kade to be seen by a doctor I googled private health care in the UK. I don’t even remember the name of the company. I called a number explained that I wanted to see a doctor who had experience with PANS/PANDAS syndrome. There was a doctor in Cambridge. It would be an over 700 mile round trip.
On the 18th of November 2016 we boarded the train from Edinburgh, with two changes to make on the way down I did not know if we would make it. It seemed an impossible journey. With a suit case and Kade on his electric scooter I wasn’t sure if he would actually make it in one piece. I had visions of his tic throwing him off his scooter infront of a train. Of him falling and me being unable to help him get back up as his body moved so violently out of control. His walking had deteriorated to a point that it was not of any use. He had no speed, it caused him pain and it was difficult to control. His legs appeared to have become disengaged from what ever process allowed him to use them previously to becoming unwell. I felt as though I was putting him in a dangerous situation, but really I had no choice but to seek help.
Kades condition would probably cause most people some amount of emotional distress. He never showed any distress to what was happening to his body. Occasionally he would become frustrated however this was only when he was extremely tired. I watched my son being battered by his condition every day, and every day he stood up and showed nothing but courage. For a child of 12 to take this journey in this physical state was nothing short of incredible.
We navigated the train stations with ease. In my head all these bad things were going to happen, but none of them did. We laughed and joked and it was nice to spend some time, just me and my boy on the train. Kade was not phased as he dodged his way around the stations on his scooter, his body forcibly ticcing as he went. How he was able to keep his balance I do not know.
I did not sleep the night before his appointment. Was this going to be a wasted journey. Had I put my son through a 7 hour train journey for nothing. I hadn’t even booked tickets to get home. He fell out of his bed in the hotel, his body tic was so violent it threw him onto the floor. What was I thinking taking my sick child so far away from his home.
The neurologist we saw on the Saturday morning in Cambridge blew me away with his knowledge. This had been the right move to make. This man knew everything, every word that he said made perfect sence. His main concern was Kades condition was a manifestation of an immune mediated movement disorder. An autoimmue encephalopathy. He talked of steroids, ivig, plasma exchange, anti bodies, lumbar puncture, blood tests, EEG, EMG. He had ideas, I liked his thought process, he was logical in his approach.
I recieved his report on the Sunday by email. I knew in that moment I held the key to unlocking my sons future again.
I wonder how many people saw us that day traveling down on the train. Watching the boy who’s body threw itself around, who’s legs seemed to not work properly struggling on and off the trains. Then I wonder maybe nobody noticed at all.