When tragedy hits time does not stop, like you expect it to. Like you want it to. Stop the world I want to get off. Just for a minute please. Let me gather my crap together, sort through it, then we can carry on ok? The reply to that one is no, always no. A big fat “I think not” says the world, and on you go. It does not take you by the hand and lead you gently. It grabs you by the neck and drags you.
The movements were small at first and began just before the end of May 2016. A few times a minute Kades body would tic. His muscles were contracting in the lower right side of his back, which in turn pulled his shoulder down slightly. He would grimace in pain each time. His walking was becoming more awkward and was increasingly painful. He complained of chest pain when walking.
He was eventually prescribed codine for his pain. It took the edge off, however his pain remained chronic. He was exhausted, physically and emotionally he was ruined. He stopped attending school in the June 2016.
Bloods done earlier in the year had revealed a low neutrophil count however these had returned to normal. An MRI showed an abnormality in his spine, although this was not the physical cause of his symptoms. A red herring I was told.
Convinced my son’s earlier symptoms of anxiety, followed by the series of infections, were connected some how to his currant physical state I repeated my self over and over at every chance. Why could nobody see he was ill. He appeared to me to look physically unwell. His skin looked grey he just looked sickly. He was placed on Baclofen a muscle relaxant.
July through August were a blur, I don’t remeber much apart from a short family break to centre parcs. Kades tics, pain and walking deterioration persisted. I felt like I was never really awake. I had overwhelming feelings like I was not in my body. Like I was dreaming the whole time and I’d wake up, none of this was actually happening. I selfishly could not bare to watch my son suffer another day.
There was a brief mention of PANDAS during these months, the testing was done. It was negative. I pushed that to the back of my mind. I had looked it up and thought yes! Only to be told no. Then it was off to neurology we went.
Kade was given Clonidine in September 2016 using the train of thought that it could be a tic disorder. It had no affect on his symptoms. His condition deteriorated rapidly. The movements grew in strength and occured every 4 or so seconds while he was awake. Never stopping. His walking deteriorated so much that he used an electric scooter to get around. I was truly at a loss, by the end of September all there was, was a darkness. I prayed to a God I did not believe in. Let it be me. Let me die. I will take a slow painful death in exchange please just give my son his life back. This was a cruel and distressing existence for any human. Trapped in a body they cannot keep still. With legs that do not function properly anymore. Days melted together each one the same. Mostly in the house, curtains drawn.
Watching as his body threw its self to the side, with such a force that he would bang his head off walls or car doors. The tics would knock him off his feet or throw him from his scooter. They never stopped the whole time he was awake. Forcefull and continuous they were so strong you could not go near to him or you would be knocked out. Watching as he struggled to make his legs work just to walk afew feet to the bathroom. Every damn day for what felt like an eternity. Realising that life was becoming increasingly dangerous. Watching as he ate his dinner, praying he would not choke as his body threw itself around uncontrollably. I looked to the future and there was not one. Nobody can live like this forever.
Night and day I was consumed. With college, running a house, caring for my other son and general life I was sinking. I would have to fix this. I am the only one left to save him. If the doctors don’t know then it’s down to me. I don’t know how many thousands of hours I searched. How many conditions I read about. None of them fitted. Muscular dystrophy, spinal myoclonus, myoclonus dystonia the list is endless.
At that time I had completely disregarded PANDAS because I was told my son tested negative. Untill the day I came across this article:
I read it over and over. Ezras symptoms do not present the same as Kades, however a common thread wove its way through out the article. Personality changes, infections, illness, tics. It prompted me to dig.
I uncovered PANS. I also discovered that you cannot just simply do one blood test and one throat swab and give a negative diagnosis for PANDAS. These discoveries were swifltly followed by auto immune encephalopathy.
Through all this digging I uncovered a whole world of suffering and misdiagnosis.
As frightening as my discovery was, by October 2016 I had something I had not had in such a long time. I had hope.
Armed with my discovery I was ready for Kades 6 week follow up appointment with neurology. It never came. We called and called. Nothing. Almost 10 weeks had now passed .Time was of the essence. Time was ticking.