Welcome to Will's blog. We decided to create this site because it has been getting difficult to send out emails to the many family and friends that want updates on Will's condition. He is a very loved little boy!
In early January, 2011, Will, who was almost 18 months old, began having strange episodes where he would nod his head forward every 10 seconds or so for a few minutes at a time. We talked with our pediatrician who asked if it could be a type of seizure. Seizure?, I thought. It couldn't be. This was only a slight nodding of the head, and he was completely conscious the entire time.
We began a series of tests, including an MRI and various blood and urine tests, all of which showed nothing out of the ordinary. Still, the episodes continued, lasting anywhere from 2-10 minutes, typically around 5 per day.
|Buster at his EEG|
On February 9, we met with the head of Pediatric Neurology at the Clinic, following an EEG. We showed her a home video of one of Will's episodes, and she instantly recognized it as Infantile Spasms, a rare type of pediatric epilepsy. They were indeed a type of seizure, one that can have very devastating results for a child's development.
With the results of the EEG to direct her, she re-reviewed Will's MRI and found a subtle malformation in the left temporoccipital lobe of his brain. We were told that Will's condition was very serious, and the likelihood of him needing brain surgery in the near future is "significant". This explained why he still wasn't talking yet, and is what they believe to be the cause of his seizures.
As we sat in the doctor's office listening to his diagnosis, we were overcome with the shock of what she was saying. We couldn't find the words to ask questions or even speak, our minds went blank. And so began our journey with our precious little boy to battle this disease...