As I write this I only hope it can help others. I know how often I searched (I still do), read blogs, articles, anything I could relate to really saw me through the darkest days. Typing the same words into Google but in a different order, with some insane hope that I would find more clues (anxiety, infections, tics, walking deterioration, PANS, PANDAS, encephalitis, movement disorder,IVIG etc) I urge others to blog, write do anything to raise awareness. Tell your story if you are able to. You never know who’s reading and you may just help that one person who is feeling like they are at a complete loss. I often go back to the article about Ezra that I posted a link to earlier in my blog. I could read it a thousand times. It saved my son there is no doubt in my mind about that…..
Not long after our journey to Cambridge Kade had a lumbar puncture and bloods done back here in Scotland . It would take time for these results. They were tests for anti bodies in his blood and spinal fluid. All I could think was, we do not have time! The results would be back in January. Time passed slower than ever. Painfully slow. 6 weeks of nothing. All through this period Kade continued to deteriorate right before my eyes and there was nothing I could do to stop it. His tic was insanely strong and his walking utterly useless. He began to use a wheelchair as it was too dangerous for him to ride his electric scooter.
He soldiered on however. He was even attending school one morning a week in the support centre for a few hours. It was entirely his choice to go. Once he was home he would have some lunch and then sleep. Just functioning for those few hours knocked him for six. Often he would sleep right through to the following morning.
Kades 13th birthday came and went, so did Christmas. It is a time I wish my brain would let me forget but it won’t. Every day his body threw its self around. The only time it stopped was while he slept. He slept for longer periods of time which concerned me greatly. He could go 16 hours or more in a row of solid sleep. When you sleep your body is rebuilding, I kept saying to my self. The body needs sleep to heal. I let him sleep as much as he wanted whenever he felt the need. Sneaking in like I used to when he was a baby, just to watch his chest rise and fall. Just checking, always checking.
It was during these months I began to feel increasingly fearful for my son’s future. I had this nagging feeling of death. I could feel it in my throat, it was a lump that sat there. A constant reminder of my son’s mortality.
The new year came and Kades spinal fluid was not back. The bloods were negative. He did not have an EEG because it was felt his movements were too strong and there for the results would be of no use.
Videos were taken to a neurology conference for discussion. Myoclonus Dystonia (a genetic condition) He has had genetic testing done however the results are not back. Functional movement disorder was another suggestion.
My feelings about what was wrong with Kade had strengthened after our trip to Cambridge. I was 99.9% sure it was some kind of autoimmune encephalitis. I also had a phone conversation with someone from the Encephalitis Society. The man I spoke to took the time to listen and we bounced ideas back and forwards. It was our trip and that conversation, that gave me the confidence to calmly state that something needed to happen now. I was not putting two and two together and getting 45, there was a massive chance that this was a potential diagnosis. I stated my reasoning. Severe anxiety, infections, rash, pain, tics, walking deterioration. In that order all led me to believe that my son’s anti bodies were attacking his brain. Logically to me it was the only condition that all his symptoms could be linked to.
Kade was granted IVIG in January 2017.