The footage on this page may cause distress. Please be aware of this before you view it. These clips are not intended to shock or upset, they are an illustration of what our family is going through. These are intended to help any other families worried about what has suddenly happened their child know they are not alone.
It is important to keep in mind when you watch these that these symptoms were all completely alien to Cameron & ourselves. He literally woke up one morning doing these things. Healthy functioning child one day, and this the next.....
It is important to keep in mind when you watch these that these symptoms were all completely alien to Cameron & ourselves. He literally woke up one morning doing these things. Healthy functioning child one day, and this the next.....
This is the very first night we spent in hospital in Antrim. They hadn't a clue what to do with him they just kept giving him sedative drugs that didn't work. He was in so much pain, and so frightened. At this point they were diagnosing rapid onset Tourette's, but it just didn't fit, my mother's instinct was telling me something was very wrong....
The clip below is 2 days after Cameron took the brain storm, these were the last couple of days he had in P7.
trying to turn on a light switch
This clip is the least distressing one of bedtime I could find, it got much much worse and it would go on for hours, the jerks, the movements, the pain, the distress. Once he would finally sleep at 2 or 3am I would get up and walk out and just want to collapse in an exhausted heap.
This was Cameron trying to get up off a chair to go for a walk to Ballyboley with his Dad, Annie & Rusty. He does not mean to offend with the language its part of the condition.
These next few clips are Jonathan & I trying to get him dressed one Saturday, which proves incredibly difficult due to his body contortions. I have to laugh at myself offering him calpol, little did I know it would not even have blinked at the pain he was in!! But that's what the hospital were telling us to give him....
find this one so very hard to watch, it was only last month. We were just home from hospital after he had his EEG. This was the day we had been sent home without any treatment. He was very volatile in the car and had started punching me because I suggested his dad bring over his Xbox to Nana's. I couldn't raise my right arm above shoulder level it had been punched so much. After the video ends dad & I manage to get him out of the kitchen, I knew I needed to get a stat dose of meds into him but you need his co-operation for that! Eventually he was sitting on the stairs, quietly sobbing and agreed to take his meds. But after he just looked at me and said "please mummy stop fighting for me, I can't take it any more, I don't have the strength" I swear a piece of my heart broke at that moment. I said I was sorry but I could never stop fighting for him and not to worry I had enough strength for th both of us. He slept for 6 hours after. These crises are like grand mal fits in epilepsy, they leave the person beyond the point of exhaustion