When my son Jack was four months old, he began making some unusual movements – crunching up his core and throwing his arms out to the side. After a week or so we took him to the doctors to describe the activity. They said it sounded like some sort of wind, stomach cramps or similar. We tried a treatment for wind, but his actions continued.
Unfortunately, we know that Jack sustained a brain injury at birth. This eventually led to the diagnosis of infantile spasms, and later epilepsy and global developmental delay (GDD). He has just turned seven, is still non-verbal and only started to take steps about two years ago. The combination of GDD and epilepsy means that Jack is at a special needs school, and we worry if he’ll ever be able to live independently or have a job. We think twice about things like booking a holiday: What if he has a bad seizure while we are away? As Jack has never known any different, he takes it all in his stride and is a very happy little boy. Although he cannot tell us if he can feel a seizure coming on, he can certainly still communicate his needs.