Tick tock

We are half way through May, Kade has continued to decline health wise since his set back in January 2017. A lot has happened since then, we have been to London to see a team of doctors to discuss how to move forward. I have the hopeless gut niggling feeling that the plan for Kade is not the right way to deal with his condition. Kade is chronically fatigued at the moment, he can function for short bursts of time. He feels weak and is unable to attend school, he is struggling with his anger and frustration at home. He is not in a good place mentally or physically. The other week I felt as if I was watching him swirling down a plug hole, I wracked my brains, I need to stop this now.

Driving to his tutor I said to him what do you feel you need, “my body feels weak I think I need physio again” after that it all clicked into place. I suggested swimming and got him an induction at the gym. That week was long and difficult, but my son dragged his exhausted body and mind from his bed and he done it. He went swimming twice that week and attended his gym induction. Each day was a tiny step for him towards the light away from the darkness. I began to hear him play his piano again and the following week, the tinkle of the keys, he’s coming back. The week after that he returned to the gym for a few sessions. More piano playing and he went to his tutor. Kade does what he can when he can because it is him who is dealing with this emotionally and physically, I am only there to walk beside him, I will never tell him he must do something, he knows his own body and mind. I will pick him up and help him light the way but this is his journey.

The plan as far as I’m aware from reading the report we have received from london is to introduce steroids at a low dose, along side the ivig, then attempt to space his treatment out again. If Kades symptoms return an antipsychotic medication will be used and he will continue to be taken off of the ivig altogether. Alarm bells sound loudly in my mind. My sons symptoms are caused by inflammation in his brain. I have already contacted a private doctor, my concerns that what ever is causing the inflammation in his brain is not being treated effectively is on my mind all the time.

Kade has his ivig treatment tomorrow, I have no idea when the steroids are being started. We are in a limbo just now. I am concerned about the long term affects of so many ivig infusions on Kade’s blood viscosity. We take each day as it comes one by one and we will fix this, it has been difficult to decide what road to take next but I have finally made my decision. I won’t allow my sons brain inflammation to be covered up by an antipsychotic drug, I will ensure he is tested and treated appropriately.

So far this year has been very difficult, I am only the bystander watching my child having to deal with this disease and trying in every way possible to keep his head above water. He is just a boy of 14, he should be running for the bus in the morning, I should be shouting to him about remembering his gym kit, complaining that he needs to tidy his room, he should be sitting in the sun at lunch time with his friends, playing pranks on his brother. My mind wanders to these thoughts often, they take me by surprise, normally when I’ve just pulled up in the driveway or in a car park. It’s the sudden stillness and silence that bring these thoughts. I take a breath and compose my self, no use falling apart, there is much to do and time is flying by, tick tock.

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