After five days of gradually increasing anxiety, causing sleepless nights, loss of appetite, and vomiting Kate had a generalized seizure that required a dose of Valium to break through.
Kate’s doctors have consistently reinforced with us the role that fatigue plays with regard to the onset of seizures. Today’s seizure fits the model / trend of physical and mental fatigue as a contributing factor. There were smaller seizures lasting two to three minutes starting last weekend. Her inability to sleep at night seems to come from anxiety or anxiousness that wakes her up around the same time each night (2am). In the early days of the cycle Kate will go back to sleep at 5am or 6am for an hour or two. When the cycle is at its worst, five to six days into it, she will not go back to sleep at all. Staying up from 2am until a nap mid day. A four year old should not be able to get by on 6 hours of sleep… and she doesn’t. Her behavior turns dark and occasionally violent with her sisters and her mother, lashing out, hitting scratching, punching, unprovoked.
The seizure today was unsettling and frustrating, reinforcing the sense that we have no control over her well being. In an effort to create more understanding we are traveling to the Mayo Clinic in Rochester MN December 3rd.
Kate is currently resting at home with us, safe but exhausted, sleeping off the effects of the Valium and hopefully rebuilding her strength.