Now that Brody is nearly 5, I have finally got used to the fact that Global Development Delay (GDD) doesn't mean "may catch up" for us. It's forever. And because he is still primarily undiagnosed, despite an autism and epilepsy diagnosis (as well as a few others), GDD seems to be moving on to a new "catch all" term - learning disability.
Unless you have had experience of having a disability or caring for someone with a disability do not judge. Words hurt, we have feeling too. Every comment every snigger or every stare it stays in our heart. What you think you know, you know nothing. My child is my world, my life is not what I thought it would be, I am a carer I am a wife and a mum, I am no longer me.
It might be that your child has severe epilepsy and disabilities, but no diagnosis. Keep pushing, keep exploring the different options, and rarer conditions like Dravet and CDKL5. But more and more children are being diagnosed with CDKL5 as awareness spreads. We can all do something to share and make others aware of these condtions
PulseGuard successfully alerted us to every one of Tom's seizures within the first two years of trials. Whilst talking to Tom's consultants, other Epilepsy professionals and parents, it was very clear that a lot of people were interested in having an alarm system that seemed to be as accurate as it was proving, but this would mean throwing everything we had into it.