I am still frustrated at the fact my son has no formal diagnosis. The spinal fluid that was sent away in November for anti body testing was sent to the wrong lab. It was never repeated. We found out in April 2017 it had gone to the wrong lab. This angers me. I can accept the fact it was sent to the wrong lab but for it not to be repeated still astounds me. When testing for autoimmune encephalitis the CSF anti body test is increadibly important.
Thankfully Kades IVIG treatment continues to have the desired effect. Kade continues to have a constant head rock tic from side to side. Small it may be but it is still there. His walking also continues to improve. I still give Kade a turmeric supplement but not daily any more, around three times a week. I guess I will never know if it was the turmeric (which I chose as it is a natural steroid) that has been helping with Kades mobility. Turmeric has the ability to cross the blood brain barrier hence it is able to assist in the healing of the brain. It was around 6 weeks after beginning the turmeric that Kades walking really began to make a noticeable improvement. I do not think this is just coincidence.
Kades MRI scan came back “normal”. I believe if a PET scan was performed that it would have shown inflamation in the basal ganglia of his brain. I did ask for a PET scan however it was never done. I believe my son’s brain would have lit up like a Christmas tree.
Watching my son now, no longer in chronic pain and slowly regaining the ability to walk again is nothing short of a miracle. Watching as he sits relaxed his body not throwing its self around uncontrollably. I am glad I stuck to my guns and persisted with the fact I did not believe for one second this was all in my son’s head. Watching as his behaviour changes there is more of the old Kade present than the one that took over so much of his personality. Kades doctor finally realised his disinhibition after afew treatments, he realised he was a very different boy to the one he has previously met. Kade is more relaxed in himself.
For me this is simple my son has autoimmue encephalitis. What kind I may never know. I will continue in my mission to have him diagnosed properly. Weather its a clinical diagnosis of PANS or PANDAS (which for me falls into the autoimmune encephalitis category anyway) or autoimmune encephalitis (because no antibody has been detected due to the CSF test going missing). My son needs a proper diagnosis to ensure if anything goes wrong again in the future he is treated immediately.
I continue to read many a story of children suffering. Parents fighting to get the help they believe their children need. Why are doctors not listening when people are saying something is wrong here. Please help my child. I do not understand the lack of interest even. Dismissing children as just being not right in head is sickening.
I recently read a story of a young boy aged 14 in Canada called Brody. His mother believes he has Lyme disease. I can tell you now that woman is right. She knows her son, like no one else. They have also had testing done that has came back positive. He is in chronic pain and can barely walk. How dare he be ignored he is a child who needs help now. His suffering is intense he cannot even bare to talk because the sound of his own voice causes pain. This family is fighting for their son’s future it should not have to be this way. This is Brodys story please share it…
It is summer again and how different it is from the previous one. Last summer my son was in chronic pain, losing the ability to use his legs, his body thrashing around uncontrollably. This summer he has peace. He can relax. We went to the beach for the first time in such a long time the other day. My son walked into the water, he threw stones with his friend, they played with the dog, he cut his foot on a rock. These four simple tiny things mean the absolute world to me. My son has been all the way to hell but he is almost back. It’s been a long time but finally I can say, I see him.