Friday, 6 April 2012


When Nick was a baby, he was a terrible sleeper. He would doze off and suddenly, his arms would fling themselves outward, his legs extending and he would scream. We called this his 'startle' reflex and put it down to Nick being Nick. When he was tiny, we found it helped to keep him swaddled tightly, so that the jerks were contained.... I remember that at the cottage, we put a sign on the hallway door, "Quiet, Baby sleeping...lightly!" Any tiny sound would result in a startle and then a scream. It never occurred to any of us that his behaviour might actually be a seizure disorder.

Then, when Nick was about 7, he had his first orthopaedic surgery. It was a lengthening of his heel cords and adductor muscles. The doctor in London suggested casting him afterwards in a 'broomstick' style paster, with both legs open wide and a pole wedged in between to keep the position stable. His feet were cast as well, with his feet at 45 degrees in order to allow the heel cords to maintain their stretch. When Nicholas came home after that surgery, he began to have terrible symptoms, but only during sleep. He would be sleeping peacefully when, suddenly, his casted legs would jerk up into the air and he would scream terribly until we turned on the light and firmly woke him up. During the worst times, this would repeat itself every 3 to 5 minutes. Only during waking hours was he somehow free from these terrible episodes. Finally, Nick became so exhausted and ill that he was readmitted to hospital for telemetry tests. A camera was put on Nick and when the neurologist viewed it, she diagnosed frontal lobe seizures. The surgeon recommended removing the cast two weeks early. When the cast came off, pressure sores down to the bone were revealed on both his heels. Poor Nick, his heels looked like white jelly. We were transferred to Great Ormond St. Hospital and the overnight test was repeated, but no seizure activity was seen on the tracing. Everyone was mystified by the events and we were sent home to have daily nursing visits for almost a year in order to fully heal the pressure sores on Nick's feet.

Fast forward to this year. We now have a diagnosis of nocturnal seizures and we know that Nick's arm jerks during sleep are, in fact, seizure activity. Last night, the nurse reported 16 or more jerky movements AND Nick being disturbed by any small sound or movement.

Sometimes it takes a lifetime of staring at someone you love to understand what is happening to them, especially if that person is medically complex and non-speaking. I can't help but wonder how our lives would be different if we had known to medicate Nick's seizures when he was young. So much of what Jim and I battled was sleep deprivation.... I know that hindsight is 20/20 and that we did our best, but it is bittersweet to wonder.
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