It has been two years and three months since every thing began to go wrong. That is a long time when you are a child. Remember how long the summer felt when you were small or the weeks until Christmas came? It is a very, very long time I am sure you will agree.
After 12 months of certainty we are entering the unknown. So far Kade has recieved 12 rounds of ivig. Every four weeks his body has been pumped full of anti bodies from thousands of other people. It is hard to comprehend. Is it good? Is it bad? No one knows. Was it the right thing to do? Was it wrong? No one knows. All I know is my son has not been sick this entire time.
The decision was made to see if Kade could go 6 weeks between ivig treatments. He has been unwell since week 5 with a sore throat and cough. Is it coincidence? Is it the lack of the donor anti bodies? Let’s face it. No one really knows.
I’ve seen him sick before, but this is odd his eyes were red, he looked as though he had been crying, he had not. He was hoarse and tired. His throat felt as if he had swallowed glass. After almost a week and a half his symptoms appear to be changing, he is still tired but today chest pains like burning have started.
He’s had a throat swab done by a GP, it came back “normal”. His facial tics increased slightly I thought around week 5, days before he mentioned his sore throat. I hoped for a positive strep result because then I could maybe forget about NMDA, VGKC , paraneoplastic, genetic malfunctions, viral and bacterial infections and everything else that swims around my brain 24/7.
It has been almost a year since his case was put to a panel to go to London for further investigation. We are still waiting for his appointment. I hear it is ment to be in March. So much time has passed.
We are no longer moving forward we have ground to a halt. Due to his sore throat Kade never recieved his IVIG we are to wait another week until he is better. How ironic. So when he recieves it, it will be 7 weeks since his last infusion.
There are so many blood tests I would like done to see if we can pinpoint what may be the underlying cause. By the time Kade recieves his next treatment and recovers from it, he will have missed almost three weeks of school.
Kades chest pains, a burning sensation when he walks or moves too much, was one of the very first symptoms he presented with way back in 2015. As soon as he mentioned it I was immediately on guard.
I am reading more and more about possible causes, walking pneumonia, lyme and many more infections. Lupus also niggles in the background purely because of the chest pains. I will discuss these with my son’s neuro at our next meeting. I do not think it is unreasonable to want to rule these out. I believe the ivig may be holding at bay the true culprit in all of this and I will find it. Something bacterial or viral is lurking, that is where my thoughts are leading me now.
To date I have read hundreds of stories about children suffering. Diagnosed or undiagnosed each is a life being stolen day by day until suddenly years have passed. You don’t get time back, there is no pause or rewind. That is it, you wave good bye.
We have reached a point in this journey where yet another storm has hit but this time, I am ready.
Another slip, I will catch him, before he falls.
Edited on the 11th of February 2018 to add, after Kade recieved his ivig on week 7 he continued to have chest pains. Completely exhausted he slept for very long periods of time. The chest pains then changed to a feeling of crushing on his chest. He described it like there was a weight on his chest. He was checked over at the local hospital for any acute causes for the pain and they found none. He continues to sleep for long periods. His gait when walking has changed, and became more exaggerated, he is less stable on his feet and I can see slips in his personality. It has now been 3 weeks and 4 days since he has been able to function on a regular basis. Hopefully the ivig will manage to pull this back for him only time will tell.